Preparations

This morning, I made a trip that I have been dreading for quite some time. A couple of friends accompanied me to some funeral homes as I plan for the inevitable. Unfortunately, the time is drawing near. Since his seizure the other day, we have noticed a decline in his condition. His nurses have been by the house everyday since. I settled with a funeral home that I think will serve our needs. The staff was courteous, professional, and very warm and welcoming.

Two nights ago, Scott became unresponsive (staring blankly), his breathing labored, and he would not eat or drink. Then he was very agitated, pulling his sheets and blankets and trying to pull his bed rail off. It was a long night but eventually the meds his nurse gave him kicked in and he was finally able to rest.

Yesterday morning, his nurse decided to stop all oral medications because he is having difficulties swallowing. He didn't eat anything at all yesterday and barely drinks water. We don't know how long he will hold out for, but we feel it is close. So now, all we can do, is keep him comfortable, tell him we love him, and prepare for what's to come.

 

Scott’s best friend, Clarence, wrote this to our group page:

Scott, my wish is that this message gets to you before you go. Although I am restating what you already know I want to tell you that you are so loved, By your family and friend far and wide. You are an inspiration to many because of the kind of man you turned out to be. While your body breaks our hearts break with it. And when you're gone, the void you leave will never be filled. We will cope and have memories of our theatre days, for some they will remember times in the sound booth or in class. Others have times watching WCW or WWF, we'll have D&D, Magic the Gathering, or just walking around IB because we could. Please know that when you are gone your family will still be cared for and we will be here to help them through their grieving.

I'm going to change it up a bit. While scott and I was waiting for Matthew he shared some serious thoughts but even though it was a grim mood he wanted to joke still so I will end by saying. Scott if you decide to haunt us it better be like some Patrick Swazey style Ghost shit. If you go all poltergeist on us I will find that exorcism lady and we will have to listen to her annoying voice together. We love you Scott.

Neil deGrasse Tyson

Tonight, my friend, Tim, took me to see Neil deGrasse Tyson. His previous friend bailed on him and he wanted to take Scott, but that wasn’t going to work out. Tim bought Scott Fury on blu-ray and I put it in the XBox One for him to watch before leaving. I found out later that he couldn’t stay awake for it and he couldn’t see it very well anyway.

So this evening, Tim took me to see one of the world’s greatest astrophysicist. I am so thankful he considered me a good enough friend to accompany him. It was such a nice night out and a nice break to everything going on right now. Dr. Tyson was just absolutely amazing. I could listen to him talk all day. He is funny, witty, passionate, and so darn smart.

Seizure

Today was rough. Scott had a seizure this morning. His mom called me and all I could understand was that something is wrong and he stopped breathing. I headed home, driving much faster than the speed limit. My only thought was 'please wait'. One of his nurses was already there when I got home. She checked him out and concluded it was a seizure. They've changed him to a stronger anti-seizure medication and gave us guidance on what to do if this happens again. Each day that passes he seems weaker and weaker. He eats so little and still occasionally gets sick. The differences of how Scott looked just a week ago to today are frightening.

Today was a scary day and definitely not the first scary day nor the last.

On top of all this, I've definitely come down with something. For now it is just a cough. I hope it doesn't get too bad though. Besides taking care of Scott and the kids, a friend is taking me to see Neil deGrasse Tyson on Friday.

Well, time to get some rest. I am likely turning in early tonight. I'm exhausted and my body is screaming at me.

Pictures & an update

What do you think of when you hear the word hospice? Before all this, I envisioned a nursing home. I envisioned nurses and round the clock care. I remember my grandmother in her final days. That's what I envisioned.

For Scott, starting hospice means he is no longer seeking treatment for the cancer. He decided last week that he didn't want to continue doing the treatment. He tried the Avastin last week and as he went home he got sick in the car. He continued to be sick for the next several days. This was after we were told that the treatment option Scott decided to try should not cause him to be overly sick.

When you are told you have an untreatable illness and it will result in your passing, often times you begin to weigh in quality over quantity. Is taking a treatment and being sick every other week work the extra month it might give you? These are very difficult decisions and Scott did not come to it lightly. He still wishes to live, but does understand the gravity of his situation.

With all that said, when a terminal patient decides to no longer seek treatment, hospice care is the next logical step. He is now under in-home hospice care. We have met with nurses over the last few days. They delivered a bed that gives Scott the ability to sit up more easily to watch tv or play on his iPad. They bring him medications and are looking at different medications to manage his symptoms better. They offer counseling services for all of us, kids included. They are accessible 24 hours a day, 7 days a week should anything come up - big or small. They have volunteers that can come and be with Scott so if I need to be somewhere (e.g. school functions, work meeting, etc). While things have been stressful, I am thankful for the people we've met through hospice. They've been so understanding and helpful.

Scotts sleeps a lot. I'd say more of his day is spent sleeping than awake. He has been getting sick nearly everyday for over a week. He gets headaches and forgets things or confuses easily. And I’m sure it was quite evident that Scott looked quite under the weather at his party. Scott is now unable to get out of bed safely and is bedridden, requiring assistance with everything. His birthday party was likely his last outing.

We are taking things day by day. I know that now, if anything comes up, we have support through his hospice providers. I fear, though, that he isn’t going to last much longer.

With all that said, Scott had a bunch of photos taken at his party. It’s been amazing.

Scott’s Birthday Bash–A life celebration

We had an amazing turnout! I can’t wait to get pictures and video. Here is a video I took from my phone (if the video previous doesn’t show up, click on Post below). Our gaming friends sang “Sweet Caroline” but instead it was “Sweet Scott Hooper”

I love our gaming family. They are amazing!

Scott did get sick during his party, but otherwise, he did have an enjoyable time. He was so tired, though, and had to leave a bit early. Tonight, he’s been working to get some good bm’s, which they believe has been his primary cause to his nausea the last couple of days.

Post by Mary Jane Hooper.

A new bed

I broke down when they came to do Scott’s paperwork for hospice care. I cried on the way home from work. I cried while talking to the lady with hospice care. That was yesterday.

Today, they brought his new bed. His nurses came to check him out while the bed was brought in and set up. My friends, Tim and Matt, helped to disassemble our king sized bed to make room for Scott’s hospital bed. Tonight I sleep on the couch. Not next to Scott, but alone. It’s going to be a long night.

Scott seems to like his new set up. He can sit up without having to make any effort or using extra pillows. The dogs definitely found their way on the bed to keep him company and warm his legs.

Last Birthday

Scott turned 35 today. He made it. And what does he want to do? Go to Dart Warz. His party is in less than a week and we’ve already got 130 people RSVP’d!

Scott is seeming more and more ‘out of it’. Just not completely there. He is so much more tired and eats way less. He didn’t eat dinner tonight and pretty much slept after Dart Warz and through the night. He’s officially decided to stop and we will start hospice care tomorrow. He threw up three times today. He’s just wasting away. I am so beside myself. This is really happening. Hospice care. Why? I want him to be around. I want him to live. Not die.

Happy 35th Birthday, sweetie. I’m sad that this is your last. That your fate has been sealed and our adventures are coming to a close. The number of kisses and hugs we have left together are numbered and are few. I wish things could be quite different. But they are not. This is what we’ve been dealt. This is the hand we must play. What a crappy hand.

Indian Food & Treatment

Scott checked off another bucket list item today - eat Indian food. He couldn't eat much mainly because he's been getting sick since starting treatment. But he loved the food he did eat.

So, Scott started Avastin this week. He goes back in two weeks for another treatment. So far, he is has gotten sick twice, once on the way home from treatment and once this morning. He says he's willing to do another treatment but if we can't control the symptoms better he may consider stopping it. We also noticed that his left eye is dilated and he can’t control it as well. Likely because of pressure in the brain.

Otherwise, he still very tired and gets an occasional headache. He was very excited today since we went out to eat and he finally got to eat some Indian food.

 

 

Party date set, another “Scott”luck, and Jurassic Quest!

We have an official date for Scott’s birthday party! January 25th at Back East Bar & Grill in Monument, Colorado! We went to the venue to check it out and they treated us to dinner. Scott and I really liked how laid back it was and we are excited to have his party there.

On Friday, we went to see Scott's oncologist. After talking with her and the pharmacist earlier this week, Scott has decided to try one of the treatment options. He is going to start taking Avastin as of tomorrow. He will go in for about 60-90 minutes every two weeks. Avastin is classified as a chemotherapy drug but it works in a much different way than traditional chemo drugs. Instead of attacking rapidly growing cells, this drug focuses on the vascular system, specifically blood vessels. While there are possible side effects, the overall crumminess of traditional chemo won't be as prevalent with this drug. His oncologist is not sure if this treatment will work, as Scott's case is very unusual. But she says it is worth a shot and, if successful, it would provide Scott with more time. He decided to give it a try and if he experiences any bad side effects that he feels he cannot handle, he will cease treatment then.

Yesterday, our friend’s organized another ‘Scott’luck. We hung out, ate some yummy food, played some board games, and just hung out. Scott decided to take some mmj while he was there and started to pass out on their couch. My friends had to help me bring him home because he could barely stay awake and keep himself upright. Thank goodness they helped me get him in the car and get him in the house when we got home. I wouldn’t have been able to do it without them. Speaking of amazing friends, I forgot to share this. At New Year’s Eve, we did our gift exchange. It is a Secret Santa gift exchange involving board games. However, when everything was all done, they all said they had a surprise for us. Our own Crokinole board – homemade, too! They all signed the back, too! Here, Melayna is trying it out.

Overall, Scott isn't doing too bad. He's definitely more sleepy than before and we've been managing his nausea and headaches, which haven't gone away and have gotten a little worse. Besides prescription drugs, Scott has been using mmj to help with his symptoms. We are still trying to figure out appropriate amounts, but so far the effects have been positive. The other symptom that I've noticed becoming more frequent is memory issues. He has been much more forgetful as of late. Hopefully, it doesn't get too much worse than it is.

Today we went to Jurassic Quest. Scott napped as soon as we got home. But we all enjoyed our time hanging out at the event center. I think it was a bit overpriced, but the kids had a fun time. Lots of big dinosaur models, activities, bouncy houses, and such. It was a good time and we got to spend it with our friends, too.

Keeping busy

Scott’s latest news has weighed heavily on my mind. We are still trying to do things, check things off his list. Just spend time as a family. Despite his symptoms progressing, more fatigue, more nausea. We got some options from his oncologist and most aren’t looking too good. He could do chemo. He technically only did one treatment back in October. Then he did radiation and when he was supposed to do chemo, his counts were too low for a few weeks. Then his symptoms progressed and he couldn’t do chemo. So much time has passed. There are two other options we will learn more about later.

But Scott doesn’t want to do it. He really doesn’t want to continue to get sick. He can’t have another operation – the tumors aren’t operable. Nothing can be done to eradicate the cancer. The doctors can’t make any promises that the treatments will even work. If they do, they aren’t even sure how much time he could gain from it.

Scott sets small goals for himself. Right now, he just wants to make it to his 35th birthday. That is all. Beyond that, maybe Valentine’s Day.

We went to see Mockingjay with the girls, went shopping at Kohl’s, and went to Painting with a Twist as a family. We spent time with some friends who are in town, playing Magic: The Gathering and Crokinole. We evening went out to eat with them.

 

I am now in the planning stages of a big birthday bash for Scott. I’m excited about putting on the biggest, baddest birthday party he’s ever had!