Cancer Timeline

I have a ton of blog posts started, but this is what I get the most questions on lately.

Background – From the age of about ten, my dad was overweight. As a young adult, he yo-yoed but ended up on the heavier side. As kids, we never seemed to notice. It didn’t bother us. He wasn’t big, he was just Dad. It bothered others though. I remember when I was 15, he got demoted from his management position at Albertson because he didn’t look the part. This was just one of many things he went through due to his weight. I didn’t realize how much his weight bothered him until he announced that he scheduled himself for the Lapband surgery in 2014. None of us knew that this would be the beginning of the end. The rest of this post is a timeline.

June 2014 – 2018 – Lapband surgery was successfully performed. Dad recovered well and continued with his life. We took frequent trips to Magic Mountain and went on a few family vacations, had parties and everything was normal. All was well in our world. Dad lost 100 pounds and was happy. We were so proud of him!

Summer/Fall 2018 – Dad started having some trouble swallowing. He said he felt food getting “stuck”. He would say “it just won’t go down”. He went to the Lapband doctors. They checked the band and said it was fine. Each time my dad went in, the adjusted the pouch of saline. The problem subtly got worse, but he thought everything was okay because the Lapband was still in place. He thought maybe it was in his head.

Fall 2020 – Dad was no longer able to eat much and had lost an additional 70 pounds. He went back to the Lapband doctors and when they checked the band, it had slipped and was no longer at the correct angle. It needed to be removed. An endoscopy was scheduled.

September 4, 2020 – They tried to do an endoscopy but said his esophagus was blocked by what was most likely scar tissue. This is when we should have prepared for hell, but we had no idea what was coming next.

September 16, 2020 – Lapband removal surgery. Due to the COIVD restrictions, my mom was unable to be with my dad during the removal surgery. This outpatient process was scheduled for less than an hour but there were complications. The Lapband had broken and was in a few pieces. The scar tissue in his esophagus was unlike anything the doctor had seen before, so he took a biopsy. This was not relayed to either of my parents. The surgery took around three hours. My dad was admitted and had to spend the night in the hospital.

November 4, 2020 – You haven’t missed anything. It has been SIX WEEKS since the biopsy that no one knew about. My dad received a call from the doctor saying that he needed to come in right away to discuss the results of what was found in his esophagus. The soonest they could get him in was November 13.

November 11, 2020 – My dad had an appointment with his regular doctor and complained of pain in his groin area that had been going on for a couple of weeks. The doctor had him lay on the table and examined him but found nothing. My dad later told my mom that he only feels the pain when he is standing or in an upright position. He later talked to the doctor and learned that he had a hernia that would need surgery.

November 13, 2020 – Appointment with Dr. Tsuda (bariatric and general surgeon) and Dr. Kirgan (oncologist) – The doctors confirmed that the biopsy was indeed cancer, but a cat scan would be needed to see exactly what type of cancer and what stage it was in. They said dad would have the scans within a week because they needed to move quickly on this. The dr. ordered three scans. One of the chest area, one of the stomach area and one of the pelvic area.

November 16, 2020 – I asked Dad if he had a gut feeling about the cancer. He said he honestly didn’t think it was bad and he would be able to beat it.  I spent time with dad making phone calls to the insurance company and doctors office trying to get the cat scans approved and scheduled. The insurance company said they were waiting on the doctors. The doctor said they were waiting on the insurance. And so it begins…

November 17, 2020 – Nothing from either the insurance or doctors.

November 18, 2020 – Insurance denied three scans, they only approved one scan with contrast. Mom called the doctor’s office.

November 20, 2020 – Insurance finally approved all three scans with contrast. They notified and faxed the approval to Desert Radiology. Dad was told to wait until noon to call Desert Radiology to schedule. This would give them time to get it off the fax machine.

November 24, 2020 – The Catscan is now scheduled for December 3^rd. The sense of urgency felt before is clearly gone!

November 26 – Thanksgiving. Emotions are at an all time high with so much that is unknown. I sat next to my dad and felt guilty for wondering if this would be his last Thanksgiving. I don’t remember anything specific about any conversations. Everyone tried to act normal and not talk about what was going on. It was a big Thanksgiving with a lot of family that we only see around the holidays.

December 3, 2020 – Dad went in for his Catscan. He should get the results next week.

December 8, 2020 – Dad had an appointment with Dr. Kirgan (oncologist). It was a little worse than they thought. Dad had some type of carcinoma that had spread to his esophagus, the junction that joins the esophagus to the stomach, and the stomach. They saw a spot on one of his lungs and a few spots that look “suspicious” on his spine. He has an appointment with another Dr. tomorrow afternoon to discuss surgery. Dr. Kirgan told dad he would need to have chest surgery immediately and also needs to have a stent put in so he can regain the nourishment necessary to withstand chemo. He had lost 4 more pounds and now weighed under 200. He still can’t swallow very well. If they are unable to do a stent, they will look into putting a feeding tube in. Dad asked him about the Cancer Treatment Center of America and Dr. Kirgan said that would be a good place to go because all of their doctors are under one roof and could collaborate.

Dad had a phone interview with the Cancer Treatment Center of America today and scheduled an appointment for Dec. 21 for a petscan and second opinion.

December 9, 2020 – Today’s news was even worse than yesterdays. The cancer has metastasized to two places in his stomach. The doctor said its most likely in his lymph nodes and has spread to other parts of his body. Surgery and chemotherapy are no longer an option at this time because he is so weak and malnourished. The doctor ordered a petscan and an appointment with a radiologist to start radiation ASAP to try and shrink the cancer that’s in his esophagus so he will be able to eat better. The cancer has eaten through part of his esophagus and lining on the surrounding wall. They have labeled it as Stage 4.  Dad said he is nervous but hopeful that he can beat it. My mom is a wreck. My sisters and I are numb.

December 10, 2020 – We woke up to find Mike’s truck window was shot out last night. Apparently, there have been multiple reports of people’s vehicle and house windows being shot out by a group of older teenagers. I cried because the first person I call when things like this happen is my dad. Dad told me his back has been hurting and he is having a hard time sleeping. He doesn’t know if the pain is in his head or if the “suspicious” spot on his spine is something more.

December 11, 2020 – Dad had a phone conference with a nutritionist from CTCA. He went over everything he was able to eat, and she said she would send some protein shakes that might help him get some calories and nutrients in. She told him to eat in small intervals, a few times a day.

December 14, 2020 – I went next door to see how Dad was feeling and he wasn’t home. I called him and he said he was on his way home from work. He sounded out of breath and in pain. I asked if he was okay, and he said no and hung up. About 5-10 minutes later, he pulled in the driveway, got out of the car, and handed me his stuff. He said his stomach hurt and he didn’t know if he had to throw up or go to the bathroom. He was in the bathroom for over 20 minutes moaning. When I checked on him, he said he was too weak to get dressed or walk. I helped him to his bed to lay down. I called Morgan (she is a paramedic) and she brought out some antinausea medicine and started him on an IV. He was in and out of the bathroom a couple times and started to feel better after a while. I stayed for a phone conference with his nurse, Vicky, from CTCA. She asked us to send her all of his medical records from the doctors here ASAP. My mom was added to his file as a person to contact. My dad went over the timeline of his diagnosis and answered questions about body systems. Today he is 5’10 and weighs 195 pounds. He updated her on the stomach trouble he had today, his increasing back pain and his hernia. He went through his daily medications and the nurse confirmed a call for tomorrow with a doctor from CTCA. A few years ago, dad was having some urology troubles and got a couple nasty UTI’s. he has to take medication daily to ensure that his bladder empties completely when he urinates. After the call ended, Dad laid down. I stayed and worked from my mom’s computer. I left his house to pick up Jake from the airport. He was flying home for the holidays.

December 15, 2020 – Dad had a phone conference with Dr. Lynch from CTCA. He quickly reviewed his medical history and the LapBand removal surgery. Dr. Lynch said he saw some fluid in my dad’s abdomen. He said this could be from the surgery or the cancer. The next step is to get the petscan. The doctor was surprised Dad hadn’t had the petscan yet giving what the Catscan showed. Dad told him the whole system here was dragging their feet and he didn’t even have a petscan scheduled yet. Dr. Lynch said he would put in a request to do the petscan in AZ when Dad went for his Dec. 21^st appointment. At that appointment, Dad would hopefully have the petscan and meet with the oncologist and the GI team. He would possibly meet with the radiology team and a thoracic surgeon.

December 17, 2020 – I took my dad to the mall to get my mom’s Christmas gift. He was very specific on what he wanted to get her. He chose a necklace and had me pick out an outfit. We stopped in the food court, and he was able to eat some sesame chicken from Panda Express. CTCA was able to have the petscan scheduled in AZ for next week. Dad let the doctors here know that he would be receiving treatment elsewhere and cancelled his nonexistent appointment. The doctor’s office offered him an appointment from a petscan on Dec. 24. He said no.

December 18, 2020 – Every year, we host an Ugly Sweater Party. We decided to cancel it this year due to COVID and everything going on with my dad. He asked us to still have it because he wanted to come, so we just included family. Dad didn’t stay long and left because his back began to hurt. The shakes that the nutritionist from CTCA sent for Dad to try arrived. He didn’t seem to like them very much and said they were still hard to swallow.

December 19, 2020 – Jake and I went with my parents to Goodyear, AZ for the petscan which is scheduled for tomorrow. We ate dinner at the Cracker Barrel and took my dad back to the hotel to rest. We went to look at a few of the stores close by so my dad could rest in the quiet room.

December 21, 2020 – Mom took Dad to his Petscan first thing in the morning. She said CTCA was a breath of fresh air compared to the doctor’s offices in Las Vegas. She cried as soon as they walked in and was overwhelmed. The nurse told her she could stay and wait in the waiting room, but she didn’t want to leave Jake and I. I think she just didn’t want to wait alone. The nurse took my dad to the room for his petscan and joked with him along the way. He said she was very nice. They set up a follow up appointment for tomorrow to go over the results with his oncologist, Dr. Rhadi. After the petscan, Dad felt good and wanted to come home. We went to Macayo’s for lunch and headed home. On the way home, Dad’s back started hurting. That evening, I got Dad to drink Moonshine to help him sleep.

December 22, 2020 – Dad woke up and said he felt better than he has in a long time, must have been the moonshine! I went next door for the phone appointment with Dr. Rhadi from CTCA. The petscan shows cancer in the lymph nodes behind his stomach, above his collar bone and in his adrenal glands. There are multiple spots on his spine, sternum, and other bones. Dr. Rhadi said he needs to be careful because the cancer will weaken his bones so he will be more prone to fractures. Surgery is not an option because the cancer has spread so much. The doctor said it cannot be cured, but it can be treated. She said this type of cancer can be aggressive, but chemo can slow it down. We are hanging on to that! The next step is a biopsy of the lymph nodes and inserting a port that he will receive chemo through. If they are able to get him in next week, they will. If not, it will be the following week. He will go to CTCA in Goodyear, AZ to get chemotherapy every two weeks. It will take two days each time. He will wear a fanny pack that slowly administers the chemo. The doctor also said he is a possible candidate for a clinical trial that is about to start. He will find out more about that in a couple weeks. It sounds bad, but my family was all expecting a timeline and hearing there was nothing they could do. We thanked God when that didn’t happen. We finally had some hope and the beginnings of a plan.

December 24, 2020 – Mom said Dad insisted on keeping the holidays the same, so we spent Christmas Eve with Mom’s family. My sisters and I purchased a private watch party for my parents. The day after Christmas, we would watch a movie at the movie theater and have the whole room to ourselves.

December 25, 2020 – Christmas breakfast with Mom’s family.

December 26, 2020 – We went to the moves and saw the movie Last Christmas. One of my dad’s favorite things to do is go to the movies. He seemed to enjoy himself.

December 28 – The holiday schedule has been challenging to work with, but CTCA has been amazing. I wish we found them sooner. Dad’s conference call with the radiologist from CTCA has been scheduled for Jan. 5 at 10:00. Surgery to put in the port and get a biopsy has been scheduled from Jan. 7 at 8:30.

January 2, 2021 – My mom’s birthday is Jan. 23, but today we celebrated early because Jake leaves this week. She is turning 60 and didn’t want a big party, so we put together a scavenger hunt instead. My dad had gotten my mom sucked into a couple Hallmark Christmas movies and she told us about one where the people did a scavenger hunt. She seemed really into it, so that’s why we decided to do one for her birthday. We drew names for teams on Christmas Eve. The things we had to do were ridiculous! Someone had to pretend to pee on a fire hydrant, propose in public, pay cash for .25 of gas, do a TikTok ice cream challenge…It was a lot of fun! After the scavenger hunt, we went back to my parent’s house for cake and presents.

January 3, 2021 – My parents came over after dinner and Dad asked Jake if he would go to work with him tomorrow. His back was still hurting him, and he had to go to a couple stores in the morning. Of course, Jake said yes.

January 4, 2021 – Jake worked with dad, he said dad didn’t look good and was extremely weak. Jake said he had to drive because Dad was too weak. Mom called CTCA and talked to the nurse, Vicky. Mom explained that dad is not able to eat at all and is his breathing is “challenging” (this is how he described it). Vicky told her to take him to emergency room for an evaluation. Morgan was working today at Mountain View Hospital and saved a bed for him. She would be able to see him without any problems because of her position. No one else would be able to get in. I thought it was malnutrition and dehydration and hoped it was nothing more but terrified it might be. They did an Xray, and it showed a small obstruction in bowel, dad was admitted. He texted mom late that evening saying “The dr said I need to be on chemo and radiation now. They are going to put a stint in tomorrow or Wednesday. They will start chemo by the end of the week. I need to cancel my appointment for this week (he had an appt with CTCA to insert the port) They will also put in a feeding tube. Dr. said once chemo starts I need to keep eating”. My mom was blown away by the sense of urgency. We could have used that a couple months ago when all this started!

January 5, 2021 – Dad texted at 6:34 AM saying that a surgery team of 7-8 people were just in his room. They told him the primary reason he is in the hospital is to figure out what is causing the obstruction. They told him they want to do an endoscopy down his throat. They also told him they were not sure they could get him out by Thursday (he has an appt at CTCA in Arizona for surgery) so they suggested putting in his port and doing the biopsy in the hospital. This way he wouldn’t have to reschedule with CTCA. Mom talked to CTCA and they said he can’t go there until he is medically able to travel. The ER did a CT scan but didn’t see a bowel obstruction. They said it’s most likely the cancer. The surgeon called CTCA and agreed to insert the port and feeding tube, they also planned to do a biopsy from an area behind his stomach and around his clavicle, surgery will be tomorrow, then he will be sent to CTCA to start chemo, surgeon is going to try to insert the feeding tube by going down dad’s esophagus with the smallest tube they have. If they can’t get through, they will insert is directly through his stomach form the outside, they are worried about the fluid in his stomach leaking, they agreed to let my mom see him in pre-op. A therapist walked dad around the nurse’s station. We Face Timed dad this evening.

January 6, 2021 – No school/work today. Jake and I took my Mom to the hospital and met Morgan there. We learned that they decided to break it up into two surgeries. The port will be inserted at 10:00 and the biopsy, endoscopy and feeding tube would be placed at 4:00. When my mom went in for the preop, the surgeon changed his mind and said they would do everything at once, not in two surgeries. The surgeon told mom that my dad would have 5-10 years once he started chemo. The surgery began just before 11:00. Mom was told it would take an hour and a half. The surgery took longer than expected because they could not do the endoscopy, so they placed the feeding tube directly into his stomach from the outside. They placed the port and got the biopsy needed. The doctor said he did really well and would get to come home in a couple of days. Tonight, we FaceTimed dad with my mom and sisters. He was still a little groggy and weak. His voice was scratchy, so he whispered. He was upset about not being able to see Jake before he went back to Iowa, so we snuck him in! My sister had an old paramedic shirt that Jake wore and was able to see my dad without any problems.

January 7, 2021 – I had a staff meeting for work first thing in the morning. My mom spoke to a different ER doctor at 8:30 AM and he told her that when they opened my dad up during yesterday’s surgery, his stomach was full of cancer. He told my dad with chemo; he would have 6 months. Without chemo, he would have 3-6 months. He told my parents an oncologist would be in this afternoon to talk to them and answer questions. When he left, my dad stayed on the phone with my mom and said, “I tried to be a good man”. He told her there was still so many things he wanted to do. When he hung up with her, he called me and told me to go next door because my mom needed me. I went over and she gave me the news. We called my sisters and told them. Morgan went to the hospital to be with my dad. Brittany, and I stayed with my mom. I went home and broke the news to my kids and stayed with them for a little while before going back to my mom. I called my dad and told him I loved him and cried. He said, “don’t fret”. We spent the next 12 hours thinking my dad would be gone by summer. At 8:00PM, the oncologist, Dr. Wierman, called my mom and talked about starting chemo as early as tomorrow if she could get the surgeons to agree. She said in three months we would be able to determine the future. We asked about the 3–6-month timeline the other doctor gave, and she said, “They don’t know what they’re talking about and shouldn’t have told him that’. She discussed the chemo she wanted to start and said if his biopsy came back HER2 positive, that meant this chemo would help shrink the tumor. The results should be back in 8 days. It was the absolute worst day! The saddest part was picturing my dad in the hospital alone thinking of all the things he still wanted to do and see. He was started on 5-10cc’s in his feeding tube. He will gradually get to 80cc’s. The nurse told Morgan they would set us up with an appointment with an at home pump company who would teach us everything we need to know about using the feeding tube. Someone came in and did an echocardiogram and said it was because dad will be starting chemo soon and they want a baseline heart function. Dad is in a lot of pain and it is hard for him to get out of bed.

January 8, 2021 – With Dad having a plan to start chemo and the oncologists somewhat good news, Jake decided to keep his flight to go back to Iowa and left. Brittany’s husband had a headache at work, and they sent him to get a COVID test. He tested positive for COVID, he was over at my parents last night with a headache, which wasn’t unusual for him. We decided to keep my dad at my house for a couple days when he got released from the hospital to make sure my mom didn’t have it. Brittany had to quarantine at her house. Dad was told he would be getting release tomorrow or the day after. He is ready to come home. No date has been set for starting chemo. Mom ordered a flower arrangement to be delivered to his room. The florist said her shop is not delivering to hospitals due to COVID, so Morgan took it out. When she got to his room, she said he didn’t look good. He told her he was feeling better earlier but a nurse gave him mag citrate (laxative) through his feeding tube, and it made him feel hot and nauseated. He is hesitant to take any more pain meds because he wants to be awake enough to go to the bathroom. The surgical doctor saw him and said he could not be released until he had a normal bowel function.

January 9, 2021 – Today is Morgan’s birthday. She went to the hospital to check on Dad and was told he can’t be released until he poops. He is on a ton of pain meds, which could be causing the constipation, so they ordered an enema. Mom called dad this evening, and a nurse answered the phone. She asked her for an update, and she said he is in a lot of pain, so the doctor has ordered an ultrasound of his legs to check for a blood clot. They also did a D-Dimer test (to check for clots) and it was a little high, so they are doing a CT of his chest to also look for clots. They started putting 80 cc’s (equal to 4 tbsp) in his feeding tube every hour.

January 10, 2021 – Dad is getting weaker. They quit feeding him through his tube last night because he was getting nauseous and having acid reflux. He got a bad case of the hiccups and they are very painful.  He is not talking, just whispering. The nurse told Mom it’s because he is so weak, and his throat is dry. The oncologist said he is too weak to start chemo. They have given him an enema, Miralax and mineral oil, but he still has not gone to the bathroom. The good news is he doesn’t have any blood clots and the physical therapist worked with him. They pushed him to walk to the door and had him do some leg exercises in the chair in his room. Morgan came out for dinner tonight and said when Dad was in the bathroom earlier, he called out for “Mandy”. When she didn’t answer, he called for me again. Hearing this made me happy and broke my heart at the same time. I would give anything to be able to be at the hospital with him.

January 11, 2021 – Dad finally had a good day! Morgan said she could actually see that he was stronger and more awake. She hung a butterfly and dinosaur windcatcher that my niece and nephew made for him on his IV pole. He loved them. He walked further than the physical therapist anticipated and said his pain was manageable. Still no sign of poop, but it’s bound to be soon. The doctor who did his surgery came by his room and told him he needs to start chemo ASAP. This is where the miscommunication happens. There are so many doctors and one doesn’t know what the other one has said. We made signs to take to the hospital and hold so he could see them from his window. I went to Walgreens to pick up pictures to send with Morgan to liven up Dad’s room. The parking lot is where I cried harder than I’ve ever cried before and begged God to help Dad.

January 12, 2021 – Dad finally went to the bathroom and is hoping to start chemo today. My mom said her chest felt funny this morning and got a COVID test. After waiting for a few hours, she got negative results. While she was waiting for her results, the day nurse called her and said that the surgeons have signed off, so now we are waiting for Dr. Wierman to get going with chemo. The nurse told my mom that dad told him he had raised three girls and by the interaction on his phone he could tell he was a really good dad. The surgeon came in to see dad and said he could leave today! They moved him to a room across the hall because they needed his room for another patient. We took the signs to the hospital and held them up so he could see them. We were too far away for him to read them, but he could tell one of them was bright green. Morgan was in his room with him and read them to him. The oncologist visited my dad at 10:46PM (who does rounds that late?!) and called my mom to say she is concerned about his bilirubin and liver enzyme levels. His bilirubin should be less than 1. It’s 4.5. His liver enzymes should be in the 30’s, they are 200. The oncologist said they can’t start chemo with his numbers that high. Also, his drain tube is leaking a lot, so a surgeon has been called in to evaluate. They need to make sure the feeding tube isn’t leaking into his stomach. Dr. Wierman ordered pictures of his gallbladder to rule out a gallbladder attack. Dad will have to stay in the hospital to try to get these numbers down. The doctor said he will probably be there for another week.

January 13, 2021 – No school/work today. Dad’s feeding tube got pulled out accidentally (the nurse thinks he pulled it out, but no one saw what happened). They put it back in but need to do an X-ray to confirm it’s in properly. If it’s not, he’ll need another surgery tonight. The x-ray showed it was fine, so no surgery. He is very weak, and his breathing is gaspy and shaky. I called him this evening and spoke to a nurse. She wouldn’t let him out of bed to use the bathroom. They put a catheter type thing in him and told him they would bring in a bed pan if he needed to poop. She said he was too weak to get out of bed.

January 14, 2021 – Dad got an MRI to see if they can figure out what is going on. He is confused and slurring his words. His coloring is yellowish so there is definitely something going on with his liver. The ultrasound came back clean, there is nothing going on with his gallbladder. I just don’t understand why they can’t figure it out yet keep finding all this new shit! Dad got pissed and stood up in front of the day nurse and said he needed to exercise so he could get better. The day nurse didn’t understand why the night nurse last night wouldn’t let him get up. I feel like he is trapped in the hospital. If he leaves against medical advice, the insurance won’t cover any further treatment! He doesn’t have a main doctor in the hospital, the surgeon has signed off and doesn’t see him anymore. Now he sees the rotating doctors, Dr. Wierman (oncologist) and whatever GI doctor is available. There is no consistency with any of the doctors (except for Dr. Wierman) or nurses. My mom was at my house when Dr. Wierman called. The first thing she asked was “What extensive measures do you want us to take if something happens?” When my mom asked what she was talking about, she said “Do you want us to pound on his chest and break his ribs by doing CPR?” My first thought was “What in the hell kind of question is that?!” Dr. Wierman explained that Dad was now considered “Category Two Care”. His bilirubin is 6.6. Dr. Wierman said the GI doctor needs to look at Dad’s numbers. My mom told the doctor she would need to talk to my dad and the girls. Dr. Wierman said he would be getting a blood transfusion and should start feeling better quickly. When the doctor left, my mom asked my dad what he wanted. I had my sisters on speaker phone. Dad said he did not want to be a vegetable, no extensive measures. He said he wanted to be cremated and spread wherever my mom wanted so they could be together. We told him we loved him and said goodnight. We spent the next few minutes crying and in disbelief.

January 15, 2021 – The MRI was inconclusive. The ultrasound didn’t show anything, but all the labs point to gallstones, so they are running more tests today. He received a blood transfusion last night and the doctor said he is dehydrated. She said he has a blood clot somewhere, but they can’t find it. They are waiting for a gastroenterologist to evaluate him. They did a Hidascan this afternoon to look closer at his gallbladder. A nurse told Morgan that the Hidascan showed no activity in the gallbladder, so that is why all of the junk has been building up in his body (bilirubin and liver enzymes). The nurse said she didn’t know how they’ll fix it, but they have stents and drains they can use. The oncologist said as soon as he’s well enough, they will send him to a rehab facility. We plan to fight this so he can be released to go home, recover there and then begin chemo at CTCA. Morgan brought him a razor from home and shaved his face and sent us a selfie. He looked so good and happy. He met with the physical therapist and was able to walk to the door and back.

January 16, 2021 – The GI doctor and surgeons have decided on a drain but haven’t set a date or time to insert it.

January 17, 2021 – Dad slept all day and is very weak, lethargic, and disoriented. Mom talked to his day nurse and was told the orders show the drain will be placed tomorrow. His bilirubin is 12.6. He received another unit of blood. Mom called Dr. Wierman late this evening and she said she needed to see mom in person and set up an appointment from us to go in tomorrow afternoon.  Mom spent the night at our house, and I slept in Jake’s bed with her. We talked about how scared we were and cried.

January 18, 2021 – No school/work today. Mom called to check on Dad first thing this morning and talked to his day nurse, Alex. He told her that he would call Hospice to facilitate Dad’s future needs. Mom went home to get ready. On the way to the hospital, someone from Hospice called Mom. She told them we were on our way to meet with the oncologist, and she would call back with an update. Brittany was in a rush to get a negative COVID test so she could be there for the meeting. She got her results just in time and met us in the parking lot. Morgan was able to get us into the lobby where we waited and wondered what was going to happen. I heard Brittany say, “Oh my God” and her voice cracked. When I turned around, I saw Dr. Wierman pushing my dad in a wheelchair. I was shocked. He was completely yellow and so skinny. I could see his bones poking through his hospital gown. The whites of his eyes were yellow, and he looked confused. The doctor wheeled him outside so we could talk privately. I locked eyes with my dad for just a moment and had to turn away. I didn’t want him to see how scared I was. Brittany and I hugged and cried together. Dr. Wierman said dad will be sent home tomorrow morning and had “days…weeks” left. We hugged my dad and told him we loved him. He looked confused but perked up when Dr. Wierman told him he was going home. He pulled my mom aside and said, “Come with me to get my shit”. My mom laughed and said he would be coming home soon, not right this minute. I texted Jake and told him to book a flight home immediately. The soonest he could get was for tomorrow morning. Morgan was given the rest of the day off and went to my dad’s room to pack up his things to bring home. On the way home from the hospital, hospice called my mom and made arrangements to bring a bed to the house and schedule a nurse to come out. When we got home, I put out a Go Fund Me to try to get my parent’s help with the bills that would come. A little while later, Morgan’s friends/coworkers from AMR said they were covering the cost of transport and would be personally be bringing my dad home tonight! Brittany’s friend brought over dinner. About an hour after hospice set up the bed, AMR brought my dad home. The hospice nurse arrived and went through his medication with us and told us to call if we needed anything throughout the night. She said another nurse would be visiting tomorrow. After he was settled, we turned on the TV to the Hallmark Movie channel and turned the lights off. We all sat around my dad and talked to him. He didn’t talk much but nodded and could understand what we were saying. Morgan dipped one of his mouth swabs in root beer and when she gave it to him, his eyes about popped out of his head! He had been asking for root beer the entire time he was in the hospital. Dad asked me about Jake, so we Face Timed him. Dad told him he loved him and would see him tomorrow. Mike went to our favorite donut shop and got donuts. Around 10:30 everyone left, and it was just my mom, niece, sisters, and me. Brittany went to bed with Sadie in one of the bedrooms. Morgan laid on the recliners. I was on the other end of the couch with Holly (dad favorite dog) in my lap. I watched my mom lay her head on my dad’s chest and cry for most of the night. Around 2:00AM, my mom, Morgan and I ended up in the kitchen going through my dad’s phone trying to figure out his bills. My parents have separate credit cards and we needed to see how many my dad had. We stayed up talking until 5:00AM and went to sleep.

January 19, 2021 – I woke up 6:30 AM and went home to get ready for work. I had an RTI meeting and had to make a few attendance calls. I went back to my parent’s house. I am so glad I live right next door.  Dad never woke up. He seemed to be sleeping somewhat deeply. We took turns sitting with him and saying our goodbyes. We were worried that Jake wouldn’t make it in time. Jake arrived and sat with my dad, cried, and thanked him for being such a good Gramps. My aunt Cheryl (dad’s sister) arrived with her daughter and granddaughter to say goodbye. A hospice nurse arrived and checked on dad and said he had begun his journey. We all gathered around the bed to listen. She assured us he wasn’t in pain and would stay in this state until he passed. She told us to play music and talk to him because hearing is the last sense to go. She said this state could last for a few days and his breathing would begin to crackle when the time got closer. She explained that he would stop breathing for up to a minute at a time and that was normal. As she was explaining, he stopped breathing. Everyone panicked a little and the nurse told us to wait. After a few seconds, he started to breathe again. She said this would continue as she just explained. We relaxed a little and he stopped breathing again. We all held our breath and waited. The nurse checked him and held her hand up and told us to wait. I checked my phone, it was 12:27PM. We waited. No one moved, no one breathed, we cried in silence for two minutes, waiting but he never breathed again. The nurse called time of death at 12:30PM. The rest of the day was filled with phone calls. It rained that evening. Mom said it was Dad letting us know he was okay. Anything beyond that is a blur.