August 7, 2020

Obituary:

Larry ‘Joe’ Gillespie, 77, of Edwardville, KS, passed away on August 4, 2020 in his home surrounded by family.

Joe was born in Leavenworth, KS to Raymond and Dorothy (Kramer) Gillespie on April 22, 1943. He graduated from Immaculata High School in Leavenworth, KS and attended St. Benedict’s College (Atchison, KS) on a basketball scholarship for 3 ½ years before joining the military. A veteran of the Vietnam War, he served in the Navy on the USS Bonhomme Richard and earned many honors. He married Sherry (Giles) on July 23, 1976 in Olathe, KS and went on to have four children. He worked as a Production/Purchasing Manager for an electronics firm for 46 years. He found joy in gardening, projects around the house, woodworking, tinkering with cars, and being with his family. He was a kind, gentle and passionate man who welcomed everyone into his life and always had a smile on his face. Joe loved watching sports (KC Chiefs, KC Royals and KU basketball), especially if his children or grandchildren were playing.

Joe is survived by his wife, his children Marcie (John) McTaggart, Amber (Greg) Schrage, Ashley (Josh) Wiseman, Jared (Jaime) Gillespie, one sister, Jean Dunnigan, one brother, Gary Gillespie, two step brothers John Harris and Jim Harris, and five grandchildren, Dylan and Rylie Wiseman, Zane and Alden Schrage and Reeve Gillespie.

Joe is preceded in death by his mother and father, his brother Ray Gillespie and his step sister Trudi Thomas.

​Visitation and Funeral services will be held​ on Tuesday, August 11th​ at Church of the Ascension, 9510 W 127th St, Overland Park, KS, with Monsignor Charles McGlinn (Joe’s cousin) officiating. Visitation will begin at 8:30 am, with Mass at 10 am. Burial will follow at Gate of Heaven Cemetery Parallel Pkwy &, N 126th St, Kansas City, KS.

Please note the Mass at Church of the Ascension will be streamed live on the church’s website (https://kcascension.org/media/live/). Face masks will be required and social distancing guidelines enforced. Due to the pandemic, no family gathering will be held after the ceremony.

In lieu of flowers, the family recommends memorial contributions be sent to Church of the Ascension, Ascend Hospice, or The University of Kansas Cancer Center.

The family wishes to extend sincere thanks to The University of Kansas Health System, Aquinas Home Health, Ascend Hospice, Church of the Ascension, and all family and friends for their continued love and support.

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August 2nd, 2020

After being at KU Med for a few weeks, dad was transferred to a inpatient rehab facility for rehab. During his short stay, his health rapidly declined and he made the request for hospice. On Saturday, August 1, Dad was transported back home so that he could be surrounded by his family. All the kids and Sherry are with him. The hospice nurse said there was a huge decline in his health from last night to this morning, therefore hospice nurses will now come twice a day, and when he declines again, they will be there 24 hours to offer support.

Dad is still communicating with us, but with one or two words, or a nod of the head. Currently, he still recognizes people and is his genuinely happy self when he sees someone.

Dad's cell phone has been turned off at this time. During this period, the family asks for privacy so they can spend as much time together as possible.

July 22, 2020

Good morning #gillespiestrong family.

Last Thursday, dad was taken by ambulance down to KU Med due to pain in his back, intense abdominal pain and severe vomiting. After many tests, he was diagnosed with a bowel obstruction. He will be in the hospital until the bowel obstruction is gone. Yesterday, they started a TPN line allowing for IV nutrition (as he had not eaten for a week!).

Yesterday he stated that his pain was better, but he is still in great need of your prayers, thoughts and energies. Please send him the love! He has his phone and has enjoyed video calls (WhatsApp and DUO) with family. If you are not sure how to contact him and want to, please reach out to one of us and we will share his information with you! It is difficult and tiring for him to talk, but he loves to listen!

June 14, 2020

Dad received some devastating news last week. We have each taken time to process and it was decided that we would share.

The MRI showed that the current Chemo regime is not working and the doctor said that Dad's cancer is extremely aggressive. All the pain he has been in has been from the cancer.

The doctors are going to try one more chemo drug, but they said they are not optimistic and feel that they are at the end of the road.

The news is not at all what we wanted to hear and has hit our family really hard. Please continue to send thoughts and prayers to both him and mom. He really enjoys the phone calls, texts messages and emails, so keep those coming!

June 23, 2020 - THANK YOU!

Dear Everyone,

I was genuinely surprised on Father's Day with the video that the kids had put together. I found myself overwhelmed at the outpouring of love and support. I laughed, I cried, I enjoyed. It was such a diverse video with people telling me jokes, singing me songs, and sharing memories long forgotten. Sherry and I have already watched the video many times. There are not enough words to express what each and everyone of you mean to me. Thank you from the bottom of my heart. Love you all,

Joe

*Due to the private memories and sentiments shared, the video will not be shared publicly to preserve the genuine authenticity from friends and family. We thank you for your understanding.

Update: May 15, 2020:

Dad has been in a lot of pain lately. The pain has been isolated in his abdomen and he was having some blood in his urine. Due to the virus, they have tried to keep dad at home and have been trying to diagnose and support through phone and video. He was put on an antibiotic and they requested the urine test through the Home Health Nurse. The culture did not show anything definite, but there was bacteria present. There is the possibility that he had a UTI or that he had kidney stones. They will treat him with the strong antibiotics for an additional 7 days.

He has been experiencing the urge to pass gas or have a bowel movement. The doctor does not want him to have a CT scan yet, to protect him, but is guessing that the tumors or lymph nodes could be causing this sensation. It could also be phantom pressure. They will not know for sure until a scan can be done.

Since removing him from most of his medicine, dad has been in intense pain. The doctor feels that this is from the cancer. Taking him off all the medicine made the pain real.

The cancer has spread, due to the fact that he was unable to complete the original Chemo plan. The goal is to continue with the IV chemo every two weeks and Pills (4 at once every day). This new pill took time to get there due to shipment and expense. It should not have an serious side effects and they are really excited about getting them started. IV chemo will be this Friday (3rd treatment) and will be every two weeks. The pills will be delivered and they will start these tomorrow.

Dad will continue taking the morphine (added last week when the pain became intolerable) until the new chemo kicks in, then he will be able to get off of this. The morphine has drastically impacted his personality and energy level - us kids are ready for this medicine to be gone!

His Creatinine is rising, slowly, but there was evidence of Hydronephrosis on the right side. They will schedule an appointment with nephrology to examine and possibly place a stint.

In the past two weeks, dad's voice has changed drastically. They are not sure what is causing this, but want to put him on Flonase to see if it will help.

His weight fluctuates daily. If he continues to eat and drink well, they will be able to stop the IV fluids, which will reduce the swelling his is experiencing. He and mom would both be happy to not have to hook him up to this for hours each day!

Overall, he is weak, without energy and frustrated. BUT he is still fighting. He would love to hear from people, lift his spirits!

April 13, 2020

We were waiting on some information from the doctor before sharing the latest update.

Unfortunately, when dad went in on the 9th to do the ostomy reversal, the surgeon found cancer in the abdomen and was not going to reattach to bad tissue so he closed him back up. This was upsetting for dad as he was looking forward to a better quality of life and would have made chemo much easier.

In speaking with the oncologist, she talked about three plans. Plan A, B and C.

Plan A was what he was on before attempting the reversal. He was taking three chemo drugs administered every other week intravenously.

Plan B offered a different medication that would cause excessive diarrhea (and this is what has been causing dad so much problems and delayed his treatments). The doctors were against this option.

Plan C would be a more targeted chemo drug. He is going in to the hospital today (Tuesday, April 14) to have this administered. This drug, Cetuximab, has some very serious and dangerous side effects that need to be monitored by first responders. He will go in at 8 am and will be there until he is released. If he tolerates the drug, all future doses will be at the Chemo Center and given every two weeks. If he does not tolerate, then they reevaluate and maybe move back to plan B.

He will also start an oral drug, Encorafenib, soon. The oncologist is working with the Cancer Pharmacy and he will start when the get the drug.

Dad had a CT scan done last week and they identified a fracture in his back (T12). The oncologist feels it is thinness of the bones and not cancer related. He has pain off and on in this area. They wanted to schedule a procedure to 'cement' the area, but due to the epidemic, mom and dad opted to put this off until it is safer for dad to be out and about.

Mom and Dad asked about the CT scan and the cancer. The oncologist said that she was able to see this change in the nodules on this scan and this was NOT noticeable in the scan from December.

We will update you when we know more!

April 3, 2020

Hi Team!! We know you are anxious to hear the latest news about dad. We are waiting for the next appointment with the doctors to be able to share the most detailed information. For now, know that he is home, quarantining, working on home improvement projects and video chatting daily with his family! We promise to update soon!

#gillespiestrong team - your challenge (if you accept) is to stay active during your stay at home time due to Covid-19!!

Welcome to the #gillespiestrong

QUARANTINE APRIL BINGO!!

Rules:

• • We will use the honor system!!!

  • First, download to save and /or print the board below.

  • EVERYTHING must be documented on Social Media or Emailed to Marcie, Amber, Ashley or Jared for proof.

    • Picture or video proof required for all activities where possible.

    • If you are not a Social Media person, contact one of us privately for access to email addresses.

  • Please hashtag #gillespiestrong and #flexoncancer and be prepared for us to share with our whole team!

  • As you cross off items, take a picture of the board or a screenshot and post for all to see!

  • This starts at 12pm on Friday April 3^rd. Any activities completed prior to that time do not count.

  • Lasts through the month of April. Ends midnight on April 30^th.

Prizes:

Prizes will be given to the following:

· 1^st two people to get a “regular” bingo (5 in a row vertical, horizontal, or vertical)

· 1^st person to get “X” bingo **can’t use the above bingo as part of this**

· 1^st person to get “Blackout”

So, what do you win???

A VIDEO CHAT with the WHOLE GILLESPIE FAMILY (Joe, Sherry, Marcie, Amber, Ashley and Jared!!!). We can even up the fun and have it be a Virtual Happy Hour - your choice.

Our Goal:

This epidemic that has forced us all to be indoors, to practice social distancing, to rethink what is important in our lives, can lead to a very sedimentary lifestyle. We continue to support our theme that we have been promoting this entire journey - HOW you choose to LIVE your life is how we as a team beat this cancer! Have fun with this game! Support dad and give provide him entertainment at the same time!!

March 1, 2020

Dad has been doing really well since getting out of the hospital in December. Mom has been administering two bags of fluids daily to combat the dehydration. This has drastically improved his energy level and abilities as he has been very active in projects around the house again!

Due to the increase in the Coronavirus scare, extra precautions are being taken to reduce his risk of exposure to any illnesses.

On February 10th we were informed that Dad's platelets counts were down, so chemo was cancelled for the week. According to the doctors, everything else looked good!

On February 17th we again were told that chemo would be cancelled. Dad's neutrophils were low. Due to this information, he is to stay in the house and not be around anyone. According to Google, 'Neutrophils are a type of white blood cell (WBC or granulocyte) that protect us from infections, among other functions. They make up approximately 40 percent to 60 percent of the white blood cells in our bodies, and are the first cells to arrive on the scene when we experience a bacterial infection.'

Since the last post, he was able to complete two rounds of chemo. Obviously, he is way behind schedule, but he is much healthier.

On February 21st we had some exciting news. Dad is scheduled for ostomy reversal on March 9th. This will be a big surgery, but hopefully will give him a better quality of life. The Doctor is unable to guarantee that he will be able to get off of the fluids and all his medication, but is hopeful that things will be better with nutrition and fiber. There are many risks but Dad has opted to go through with the surgery. Within the next two weeks, if he decides not to do go through with the surgery, he can cancel. Chemo will be put on hold for about five months. Dad's oncologist is the one the put in the request for surgery to improve quality of life!

Even though it is unknown at this time, we are hopeful that this will reduce the amount of medicine and fluids that he is taking to help create a more calm environment and decrease his limitations during the day.

If everything goes well with the surgery and recovery, we are planning on taking him to Alaska in July as this is a place he has always wanted to go. The entire family has already booked and plan to join him on this Alaskan cruise.

Again, the goal will start Chemo back up in about 6 months. Right now, he just has to get through the original 12 treatments, so he would not have to start all over. When these are completed, they will retest to see what the next steps are.

January 16, 2020

Monday, Mom took Dad in for lab work and to talk to Dr. Harris's nurse. Dad's platelets had dropped from 260,000 to 89,000. Dr. Harris decided not to do chemo for a week in the attempt to raise the platelet numbers. In addition, his magnesium was low so he is stayed to get a treatment (2 hrs). Mom asked if they were able to give him his fluids (3 hrs), since he would be hooked up already. They agreed.

The rest of the week has been smooth sailing. Mom has been giving his fluids every day which limits his ability to move around, but we are hoping in counteracts the reactions to the chemo. The fluids are given using gravity and not a pump. This means, when he stands, the fluids slow down or stop. He has been venturing down to his workshop to tinker with different items when he is not hooked up to fluids!!

December 30, 2019

Amber was grateful to have the opportunity to attend the most recent visit with the oncologist. First, a celebration: Dad is up to 201 lbs!!! Now, we understand that some of this is water weight from the recent increase of IV fluid, but this number made us all happy!

The doctor pointed out, many times during the visit, that they have never encountered a patient like dad. The way his body is responding is new to all the doctors and they are learning with him.

The oncologist informed us that she told the KU doctors that she wanted them to reverse the ostomy. This decision would be to increase his quality of life. She feels that the same thing will happen when they start chemo again. Currently, dad is receiving 2 liters of fluids per day via his PIC line (administered by mom). They have him on opium to try to reduce the liquid output, to increase the consistency of the output. This can be titrated, meaning they can increase and decrease as needed. Last week during this appointment, dad was putting out less than 2 liters a day, the lowest since coming home from the hospital. He is also on Octreotide and this can be titrated as needed as well.

Dad is currently setting alarm at night for every 2 hours. The ostomy bag is probably 1/2 to 3/4 full. He is able to fall back to sleep. He noticed that his legs and feet are swelling. The doctor attributes this to the extra fluid intake. Dad is constantly monitoring what is going in and what he is putting out. This will help the doctors know immediately if dehydration is setting in and allow them to titrate medicines as needed.

His ERF was 40%, still indicating some heart struggles. CEA (test for colon cancer) was 11.4. The CEA test is a Tumor marker, standing for Carcinoembryonic antigen (CEA), is a protein found in many types of cells but associated with tumors and the developing fetus.The most common cancers that elevate CEA are in the colon and rectum. Others: cancer of the pancreas, stomach, breast, lung, and certain types of thyroid and ovarian cancer. The normal level is around 2. The doctor would like to see this come down, but since he cannot be on consistent chemo it has raised over the past few months. This does not surprise her as lack of chemotherapy would prevent this from declining. If the number was over 100 they would be more concerned. There are lymph nodes in his abdomen that are showing this activity level. Most colorectal cancer is treated by chemotherapy, but due to the fact that dad cannot receive constant chemo, this activity level is not surprising.

In her opinion, metastatic surgery is always the best option for this type of cancer. During his surgery, they were able to take some regional lymph nodes, but the non regional ones were left. They took out 17 lymph nodes. 9 tested positive for the cancer. These lymph nodes are in a membrane that attaches the intestines to the abdominal wall. They are among the hundreds that help your body fight disease. They trap and destroy microscopic "invaders" like viruses or bacteria. The doctor says that some of these mesenteric lymph nodes are active.

During this appointment, Mom asked about stage of cancer. When they were in the hospital, one doctor had said stage 3 and another stage 4. In the TNM (Tumor, Nodes, Metastasis), the N2b testing (a test that tests for cancer within the same region) indicates that it is stage 4 when there are 7 or more positive lymph nodes. He had 9. So technically, he was stage 3 in the lymph nodes or stage 4 peritoneal metastasis. It becomes semantics on the name, but the doctor feels more comfortable with stage 4.

The doctor expressed that she would prefer all infected lymph nodes were all removed, but dad is not at that point.

Prognosis: stage 4 is typically not curable...but treatable. In some cases, it can be curable depending on location and treatment. The biggest threat to dad's prognosis is his ostomy. Radiation is not an option as it is not used in the abdomen. People that receive chemo can live for many years (dad has low burden because small amount of lymph nodes).

Unfortunately, Dad's BRAF was positive. A specific mutation (change) in the BRAF gene, which makes a protein that is involved in sending signals in cells and in cell growth. This BRAF gene mutation may be found in some types of cancer, including melanoma and colorectal cancer. It may increase the growth and spread of cancer cells. This can worsen dad's prognosis.

Overall, the doctor feels he has a low burden of disease. She feels a couple years is reasonable, if not more.

Currently, dad has only completed 4 rounds of chemo. They wanted to move his date to tomorrow for cycle 5 day 1, but due to the holiday, he had this done today.

When first they discussed treatment, there was the discussion of a 4th chemo drug called Avastin. She is not ready to add this to his treatment due to his kidneys. Can increase protein in urine and is horrible for wound healing as well. She said if there is a possibility of reversal she needs to hold this drug. She still would prefer to hold chemo and for him to have the reversal, but the surgeon has to be the one who says yes. She is willing to stop chemo at any point for this to happen.

December 20, 2019

Dad was released from the hospital on December 18th. After a team of doctors convened to assess dad and work together. The doctors decided not to reconnect dad's ostomy to his colon as there were too many risks (the unknown of if there are any cancer cells present that would spread rapidly, his age and current health). They want him to have all his chemotherapy treatments and then he will have to opportunity to be reconnected.

Dad had a pic line put in before he left the hospital and mom is administering two bags of fluids each day. We are hoping this will keep him hydrated throughout the chemotherapy process, so he does not end up back in the hospital.

If everything goes as planned, Dad will have his next chemo on Christmas Eve.

We appreciate all the prayers and support! Love to all!

December 1, 2019

Again, we apologize for not updating more frequently. November 19-21st, Dad had his 4th chemotherapy treatment along with fluids to help with dehydration. Dad went in for more fluids on the 25th, 27th and 30th. While the fluids help, they were not enough to keep him from getting dehydrated. Dad was feeling nauseous and getting sick daily, along with having low blood pressure readings. His ostomy bag had completely liquified and was having to be emptied every hour around the clock. These symptoms lead to extreme weakness, light headedness, disoriented and fainting.

On December 1st, he was admitted back in the hospital. The doctors stated he was very sick, dehydrated and his kidney creatinine level was at an 8. They started fluids, antibiotic and glucose and drew blood every 4 hours. His creatinine level rose to a high of 9.3!

All the doctors concurred that the cause of all the symptoms was the amount and consistency of the ostomy output. The nephrologist, infectious disease, internal medicine, oncologist are all trying to come up with a solution to this problem.

Dad's blood work came back with signs of a staph e infection through his port. Dad had his port removed and is continuing port removal antibiotics through 12/13.

They are giving Dad a shot 4 times a day to help with the output along with fluids. Dad's creatinine level is down to 3 now. Yay!

Currently, the doctors are discussing the risks/rewards of reconnecting Dad's ostomy. There is not a guarantee that this will solve the problem and it could cause more problems. Once the doctors have a plan in place, we will update again.

Thank you for all the love and support. We appreciate every text, call, and prayer!

Praying he is able to be home for Christmas! Love to all!

November 6, 2019

We apologize for the lack of updates. Honestly, things were a bit scary for us for a while. After the last update, dad was admitted to the hospital. He had seen the cardiologist on October 4th and completed an echo-cardiogram and stress test. They had put him on some heart medicine. On October 5th, after acting and feeling rather weak for a while, Dad got up to go to the bathroom and blacked out and fell straight to the floor sustaining bruising to his cheeks and nose. After seeing his lab work (from the oncologist) the cardiologist saw that his kidney numbers were rising, indicating something was wrong. He is the one that recommended the admission in the hospital. After many days of observations and watching all his numbers and output, it was determined that dad was dehydrated. At this point, dad was down to 168 lbs. His increase of output was so high that it was causing problems with his heart and his kidneys (and who knows what else!). They were able to level out and restore his body to a proper balance. While he now is reliant on more medicine, it seems to be working. He regained his appetite and started gaining back some of his weight (up to 189)! His energy level has increased as well. To help maintain this quality of health, dad has been receiving fluids twice a week.

On October 31, he had a surprise visit from Amber, who showed up to offer support and help! Dad was so pleased and happy to supervise! She was here to see him start Chemotherapy again (on Tuesday) for treatment number 3! She was excited to show off her new shirt in support of his battle.

They are able to combine the fluid treatments with his Chemotherapy and, while this makes for a long day, it helps make things easier.

The urologist, the doctor that did the neobladder, requested a CT scan. He reported that he saw nothing new or concerning and he says he does not need to see dad until after chemotherapy (6 months) is complete! So, one less appointment and doctor for a while!

Dad is continuing with the cardiologist and the oncologist as he progresses through treatment. We are hopeful that there will be no more hospital visits and he continues on a healthier and stronger path.

Again, we thank everyone for their support and love. Dad continues to enjoy all the emails, text messages, phone calls, pictures, etc., from everyone supporting #gillespiestrong and #flexoncancer. We are so grateful for the community supporting Dad and all of the other people fighting this fight! See some recent pictures below!

October 14, 2019

After two chemotherapy treatments, Dad treatments have been put on hold due to his heart function. His heart is only pumping at 25 percent and needs to be over 40 percent to proceed with the chemotherapy. Dad's white blood count is also low. The cardiologist recommendation will determine whether dad will continue chemotherapy or if another choice will be made. We will update again after Dad meets with the cardiologist. Thank you for all of the continued prayers and support! We appreciate every single one of you. Love to all!

September 17, 2019

On Friday, Dad met with his oncologist who changed his blood thinner medicine. This was frustrating because he was in the hospital for FIVE extra days so that the doctors could get the Coumadin, a medicine better for his kidney, at a therapeutic level. Dad was moved back to Lovenox shots (he was on them after his bladder cancer) that he gives himself daily, as it works better with chemo.

The biggest problem in the past seven days has been his heart. When PT was out at the house, she walked dad down to the mailbox (approximately 700 feet) and took his heart rate; it was 157. Dad did not feel exhausted. She made him wait and it only dropped to 144. They moved to the shade and she called dad's doctor and he was referred to a cardiologist. We are still waiting for this appointment.

On Monday after blood tests, Dad's potassium level was very high. He has been asked to reduce foods with potassium in them. This makes him sad as he loves his bananas. His white blood count was where it needed to be. Dad had an appointment with his kidney doctor. During this visit, his creatinine was below 3 and his doctor was VERY pleased at this downward trend. He said that he did not need to see Dad for another six months!

Today, after a three week delay, Dad finally started his chemotherapy regimen. He received steroids, and it has helped Dad's voice return to almost normal and he feels a lot better! The steroids were given as a preventative to the chemotherapy side affects, along with nausea medicines.

Look at that #gillespiestrong #flexoncancer!

Today he received two chemo medicines (Oxaliplatin/Elocatin and Leucovorin/Calcium Leucovorin Citrovorum Factor, Folinic Acid) while he was at the hospital. The entire process took about 4 hours.

The third chemo medicine (Fluorouracil/ Adrucil, 5-FU) was sent home in a pump given over 46 hours. He will return on Thursday to disconnect.

Dad will return in two weeks to have his levels checked and then, depending on results, chemo will occur again. If he does well and his kidney can handle this, in October he will start a fourth chemo medicine called Bevacizumab/Avastin given through the IV at the chemo lab.

One of the chemo drugs restricts dad from eating or drinking anything cold as it will cause intense pain. So no cold beer, no ice cream, no cold fruit, no cold water, etc. Everything has to be room temperature. :(

Here is to hoping that the side effects will not be miserable and that chemo does what it is supposed to! Keep fighting the fight with us! Dad really enjoys the Facebook and Instagram pictures and posts.

September 10th, 2019

Dad is finally home! YAY! Stats as he left the hospital were INR 2.2, Creatinine 3.17, Hemoglobin 8.7 and White blood count 9.5.

Home health care is coming out again at least once a week. The frequency will depend on his INR rate. For all the non doctors, INR stands for the International normalized ratio and it is the measure of how well the blood-thinning medication is working to prevent blood clots. An INR range between 2 -3 is considered a therapeutic range.

Dad has an oncology appointment this Friday. The oncologist will draw labs and determine if this is the best blood thinner medication for him. Labs will be done again on Monday and chemotherapy will begin Tuesday.

Dad and Mom wanted me to express their overwhelming appreciation and sincerest gratitude to everyone of you!! We are so blessed with the overall support that they have received.

God bless each and everyone of you!

Please keep the prayers coming!

September 2, 2019

There was a scare last week that dad had developed Clostridioides difficile (C. diff) requiring all visitors to be gowned. The next day, the results came back negative! Phew!

So why is he still hospitalized?

His creatinine will not get to the level the doctors want. "Creatinine is a waste product produced by muscles from the breakdown of a compound called creatine. Creatinine is removed from the body by the kidneys, which filter almost all of it from the blood and release it into the urine. This test measures the amount of creatinine in the blood and/or urine."

Since dad has only one good kidney, getting this number lower is very important.

On Friday, dad's hemoglobin level was at 6.7 requiring a blood transfusion. Doctors felt that this was caused by how much blood they were removing for testing due to the blood clot, iron levels, etc. The doctors felt hopeful that this transfusion would increase the creatinine level.

Yesterday, the creatinine level began climbing so doctors decided to keep him on fluids. They were stumped. Many consults were set up; Kidney doctor, surgery team (to check wound), and urology.

He also will not be released from the hospital until his international normalised ratio (INR) is at a therapeutic level. INR is a test done that measures how long it takes for blood to clot.

Dad has been enjoying reading all the #gillespiestrong and #flexoncancer posts! Keep it up!!

Less than 24 hours left to purchase a shirt! Help bring awareness by sporting an amazing shirt! Order before NOON tomorrow (Tuesday!) to help us reach our goal!

https://www.customink.com/fundraising/gillespie

Uncle Gary has been an amazing visitor the past week! Look at him encouraging dad to walk!!!

August 27, 2019

On Monday, Dad was sent for an ultrasound of his abdomen. They were trying to determine what was going on with his kidney, so they checked the blood vessels going into the kidney. They also checked his urine for different things as well. When he was admitted to the hospital his creatinine was 2.61 (high, but around his baseline for his neobladder). On Saturday it was 2.98, Sunday 3.16, Monday, 3.56, and today 3.64. The doctor feels it's plateauing and believes he had a reaction to an antibiotic he only had one dose of. Needless to say, that will be going on his allergy list!

His iron also is low so they are going to begin him on an iron IV.

Another item they are all working on is getting Dad at a therapeutic level with his blood thinner. His blood has to test good twice for it to be considered the correct dosage for Dad's blood. So he continues to be on an IV for his blood thinner and they adjust it as needed once they get results.

Dad is having his port placed today. This will alleviate him having to be poked so many times for blood as they can draw blood from the port. And in the future this is where they will connect the chemo.

#gillespiestrong #flexoncancer

~~~~~~~~~~~~~

August 25, 2019

This week was full of doctor appointments and unfortunately, an admission back into the hospital.

On Thursday Dad had a follow up doctor appointment with his surgical team. It was determined that mom could stop applying the wet/dry dressing and just pack his wound with dry gauze and breathable tape. Return visits were not needed unless they experienced complications.

During his other appointment with his oncologist later in the day, he was told he will be taking three chemotherapy drugs to begin with and then will add a fourth later (possibly Oct 15, to allow complete healing of his wound). He will go in every Tuesday and get two of the chemo drugs through infusion (will last approx 2 hours) and go home with the other chemo drug for two days (connected to his port) and then he'll go back on Thursday so they can disconnect it from his port. He'll have labs every Monday prior to chemo to check kidneys, blood counts, etc., to make sure everything looks good. He can go in at anytime for IV fluids to help with hydration, including before or after the chemotherapy.

A plan was made and we were all ready to support. Then, a curve ball was thrown.

Thursday night around 6:45 p.m., Mom took Dad back down to the ER at KU Medical Center due to pain in his back. They were concerned about his kidney. This had not been checked during the day as he was not complaining. He was running a low-grade fever of 99 degrees which elevated to 100.5 before they left.

Around 10:30 p.m, they were admitted to an ER room. It was decided that they would do labs, urine culture, CT scan of chest and abdomen. The doctors had expressed that his lungs sounded raspy.

Around 12:40 a.m., now Friday, initial results came back and we were informed that "Dad has pneumonia in his right lung. They are admitting him because he was just here, and he could have gotten it here. If you have been hospitalized in the last three months, and you get an infection, they admit you."

His white blood cell count was elevated. Creatinine level was 2.61, which is normal range for Dad. The pain he was feeling was probably his lung. A little bit of good news was that the fluid in his abdomen had diminished a lot since they removed the drain. Doctors started antibiotics.

Around 6 a.m., Dad informed us that he had not been able to sleep at all due to pain. They took him up for scan of his legs. For the second time, he had a blood clot in the left leg, near the same location as the first blood clot. They started him on blood thinners. There was a possibility that some of the clot traveled to his lungs.

Around 2 p.m. on Friday, the nurse came in and they started Heparin in an IV and explained they will draw blood every six hours. Once it reaches the level they want they will switch the Heparin to pill form. His nurse said the doctors are not sure if it is pneumonia in his lung or a blood clot in the lung. They couldn't tell from the scan so they are treating both.

On Saturday, Dad reported he had a pretty good night but that getting out of the bed was excruciating. He tried sitting in a chair and said if he didn't move he felt fine.

Around 2 p.m Saturday a new doctor came in. She informed dad that he has a pulmonary infarction, also called lung infarction, which occurs when a section of lung tissue dies because its blood supply has become blocked. This was affecting one segment of his lung, not entire lung. This probed that it was definitely a clot, but possibly pneumonia as well, because of the fevers. Due to Dad's one kidney, doctors were unable to do the contrast CT and so they could not get a better scan. That is why they cannot tell definitively if it's also pneumonia. They are relying on blood cultures which look good. The doctor shared that the port placement procedure would more than likely still occur, but no Chemo would occur until he is off the antibiotics. She was going to consult with the oncologists.

Prognosis on his lung is positive as it is just a segment, but it will affect Dad's daily lifestyle.

When the doctor was there she first said Dad would more than likely begin chemo Tuesday as an outpatient but that it would depend on his oncology team and as long as he doesn't get an infection in the meantime. Dad asked how would he know if he got an infection and she said your body would be telling me by fever, labs, respiratory, heart rate, blood pressure, etc. Marcie said, 'Well he was running a fever yesterday." and she replied, "He was? Let me go check his chart again." When she returned she informed them that they were right and they would more than likely move forward with placing the port on Monday, but could not move forward with chemo until the infection is out of his body and we are done with the antibiotics. This possible infection could be pneumonia in the dying section of the lung.

This is not what Dad wanted to hear and is struggling to deal with this new information. We are all trying to remain positive for him. Please, please, please use the hastags #gillespiestrong and #flexoncancer to show him your support! He is incredibly motivated by family and friends!

You know the saying, "When it rains, it pours"? Add in a broken water heater, a broken dryer and all the yard work/house work that dad used to do, and you realize how difficult life is for those supporting the one fighting the cancer.