Just another quick one before bed.
Kristina and I got over to the hospice tonight. It's BEAUTIFUL. Like, hardwood floors, nice furniture, fountains in the lobby, door to an outside patio from the room. There's a freaking library there in the building. It's really nice. I'm so so so glad we got out of the hospital.
Kirk is...slowly shutting down. He is spending less and less time awake. His urine is getting more and more pink. His breathing is getting shallow and very wet. I think we're sorta just waiting to see which final system will turn the lights out when they leave. With the exception of some coughing he is very comfortable. He has round the clock attention from the nurses, a soft bed and plenty of warm, fuzzy drugs.
Kristina and I were there for a little while by ourselves. I hooked up a cable to the little stereo in the room so we can play from music from ipods. I put on a 99X mix for him.
Tim and Deb had to go back to the house and grab some things. Decorations for the room, pillows and blankets (so they could camp out in the hospice tonight), extra clothes, etc. When they arrived we sat and talked. They both seem much better prepared to lose Kirk than they were Saturday night. Maybe if we're in the hospice for a couple days they can get a short time out before the whole funeral madness starts.
The buried/cremated issue will be a hot debate, I assure you. Kirk had previously voiced a request, years ago, to be cremated and packed into fireworks. I get the impression that neither Deb nor Tim wants to cremate. I haven't really been involved with these conversations, but I think both are equally good options for completely opposite reasons. Of course you want to follow the wishes of the deceased, however I'm a pretty firm believer that the last person to care about a funeral is the person it's for. I tend to think that funerals are for those left behind. Particularly parents and family. So no word on that yet. Only that both sides have a good argument.
I haven't thanked all you guys for the encouraging words and prayers and stories and photos and LOVE sent this way in the past months/weeks/days. Thank you so much. I think once Kirk gets to where he seems to be headed I'll call everyone.
Speaking of, I've been sketching out ideas in my mind for a party. Outdoors, fire pit, projector for movies, plenty of good food, snacks and candy. Location is a big deal. Obviously Tallahassee would be better for more people, but least good for the Lawrence family. Regardless, I think I will be creating "assignments" of sorts with Tiff and Nikki and distributing them to you. We've got a sizable army here and I'm sure we could make one hell of a monster party. At the very least I might set up a PayPal account and take donations to fund such an event? All up in the air right now. Opinions and ideas appreciated. And CC everyone else when you write me! I want a melting pot of community ideas. Mmmm...melting pot. Maybe we need fondue.
My mind's really racing about this now. Let's also have you guys email me with your specific location. And maybe a brief estimation of your travel availability. Or on a scale of 1-10. Something like:
10 - My bags are already packed. I can be anywhere you want me in 24 hours.
5 - With some notice I can get to a party on a weekend, but I don't have a car.
1 - I would have to sell an organ for gas money, my house is on fire, I'm due to have a baby come out of my body any day now, or if I leave my house the clowns will eat me. (All things we can work on.)
0 - I'm on the other side of the planet. I'd swim back if I thought I would make it in time, but there just isn't any way short of a $3000 plane ticket that I could get there.
I don't mean to put the cart before the horse, but let's definitely start working on this now. Not that a living room hug festival wouldn't be fun and cathartic, but to accomplish even half of the celebration Kirk deserves, it will require a good deal of planning.
-John
Tuesday, February 10, 2009
Monday, February 9, 2009
Kirk Update - 2.9.09, 5:30
Just a quick note. Kirk is at the hospice. It didn't occur to me that of all the benefits of the hospice, another fantastic one is that the entire staff is on the same page. Ya know? No more questions for Deb and Tim, "Are we going to try this/that?", etc. So that's good.
Oh! I also forgot to encourage you all to start CCing everyone else on your emails. Not just me. It'll mean a lot of full mailboxes...cause there is DEFINITELY a lot of mail flying around...but i figure a lot of us know each other well from school, but I doubt anyone but Kirk knows everyone on this list. Some on The List might not know anyone else on it. It would be dumb to not bring together all the people feeling the same pain. So, let's work on that.
One love my people.
-John
Oh! I also forgot to encourage you all to start CCing everyone else on your emails. Not just me. It'll mean a lot of full mailboxes...cause there is DEFINITELY a lot of mail flying around...but i figure a lot of us know each other well from school, but I doubt anyone but Kirk knows everyone on this list. Some on The List might not know anyone else on it. It would be dumb to not bring together all the people feeling the same pain. So, let's work on that.
One love my people.
-John
Kirk Update - 2.9.09, Noon
Sorry about the lack of midnight email last night! I just got done with what turned into a 15 hour shift at the hospital. I'm gonna get this email off real quick before I pass out.
Kirk was moved to a new, larger room early last night. Originally, it was to try some kind of complicated oxygen mask, but that was shot down on account of it would be a major pain (http://www.youtube.com/watch?v=UIRna9Q4l_g) for him. And besides the regular mask is getting the job done. The increased room size allowed us to steal more chairs and have everyone sitting comfortably. With exception of the nurse who once literally squatted at her computer for a minute instead of asking for her chair back out of our room. WellStar Douglas nurses = Love +10.
We watched The Simpsons and Family Guy. Or more accurately those were on while we ran our mouths some more about everything under the sun. We are NEVER short of things (and occasionally people) to talk about. Once you stop crying, there's really a fun time to be had. This continued through the Grammy Awards which made me think I need to bring some CDs over to the hospital. We have so many movies, but not enough music.
Sometime around 11:30 the Lawrences left to go sleep and be rested for more hospital this morning. Meanwhile I was wide awake from my nap and Roffelle wasn't planning on leaving either. Though he MUST be tired. He's taking such good care of Tiffany, and finding/cleaning/moving their new apartment, AND staying up all night with Kirk. I saw him in and out of sleep last night for no more than 3 hours. He's a machine. Especially to be able to jump up out of sleep, I swear, and help the nurses and me change Kirk's bedsheets. This is quite a physical ordeal due to his size and weight. It will be a strong factor in the decision to take him to a hospice over trying to care for him at the house.
Through all of this mess we watched movies. We saw Taken (B-), Step Brothers (B-), Trading Places, Ghostbusters, Back to the Future and Goonies got started when I left this morning. Kirk was in and out of sleep in the night as well, but sometime around 5am he started grabbing for his oxygen mask and trying to pull it off. I fixed the mask back on his mouth and held his hand. He responded with some pretty strong grip strength. I was surprised. He would also open his eyes wide (about half way open is "wide" these days) during the funny parts in the movies. I don't mean to suggest that Kirk was much for actively watching the movies, but if he has much concentration about anything, it's the TV or nurses poking/washing/moving him. Between the movies, goofing off with Roffelle and playing games with the night nurses (like "Guess How Much Pee Is In the Bag Before She Measures It") I had a great time.
On the whole, Kirk isn't much better than yesterday. The current hypothesis is that if they run a tube through his nose (a mild irritation compared to a surgically-installed feeding tube) they can make sure some soup makes it to his stomach (as opposed to his lungs) and the calories might give him some energy. I think this is the last service the hospital can offer before a comfy bed and comfy drugs are all he needs. Both of which are in no short supply at the hospice. I presume he'll have been moved there by the time I wake up this afternoon since they already have one picked out.
I think our Little Engine That Could has the station in sight. We'll see what he does with the new caloric energy though. For now I'm gonna go take about 400 cc's of sleep-aclilin. I'll be back at the hospital again tonight though. I don't PLAN on being there all night, so hopefully you'll get another email from me before tomorrow.
xoxoxo,
-John
Kirk was moved to a new, larger room early last night. Originally, it was to try some kind of complicated oxygen mask, but that was shot down on account of it would be a major pain (http://www.youtube.com/watch?v=UIRna9Q4l_g) for him. And besides the regular mask is getting the job done. The increased room size allowed us to steal more chairs and have everyone sitting comfortably. With exception of the nurse who once literally squatted at her computer for a minute instead of asking for her chair back out of our room. WellStar Douglas nurses = Love +10.
We watched The Simpsons and Family Guy. Or more accurately those were on while we ran our mouths some more about everything under the sun. We are NEVER short of things (and occasionally people) to talk about. Once you stop crying, there's really a fun time to be had. This continued through the Grammy Awards which made me think I need to bring some CDs over to the hospital. We have so many movies, but not enough music.
Sometime around 11:30 the Lawrences left to go sleep and be rested for more hospital this morning. Meanwhile I was wide awake from my nap and Roffelle wasn't planning on leaving either. Though he MUST be tired. He's taking such good care of Tiffany, and finding/cleaning/moving their new apartment, AND staying up all night with Kirk. I saw him in and out of sleep last night for no more than 3 hours. He's a machine. Especially to be able to jump up out of sleep, I swear, and help the nurses and me change Kirk's bedsheets. This is quite a physical ordeal due to his size and weight. It will be a strong factor in the decision to take him to a hospice over trying to care for him at the house.
Through all of this mess we watched movies. We saw Taken (B-), Step Brothers (B-), Trading Places, Ghostbusters, Back to the Future and Goonies got started when I left this morning. Kirk was in and out of sleep in the night as well, but sometime around 5am he started grabbing for his oxygen mask and trying to pull it off. I fixed the mask back on his mouth and held his hand. He responded with some pretty strong grip strength. I was surprised. He would also open his eyes wide (about half way open is "wide" these days) during the funny parts in the movies. I don't mean to suggest that Kirk was much for actively watching the movies, but if he has much concentration about anything, it's the TV or nurses poking/washing/moving him. Between the movies, goofing off with Roffelle and playing games with the night nurses (like "Guess How Much Pee Is In the Bag Before She Measures It") I had a great time.
On the whole, Kirk isn't much better than yesterday. The current hypothesis is that if they run a tube through his nose (a mild irritation compared to a surgically-installed feeding tube) they can make sure some soup makes it to his stomach (as opposed to his lungs) and the calories might give him some energy. I think this is the last service the hospital can offer before a comfy bed and comfy drugs are all he needs. Both of which are in no short supply at the hospice. I presume he'll have been moved there by the time I wake up this afternoon since they already have one picked out.
I think our Little Engine That Could has the station in sight. We'll see what he does with the new caloric energy though. For now I'm gonna go take about 400 cc's of sleep-aclilin. I'll be back at the hospital again tonight though. I don't PLAN on being there all night, so hopefully you'll get another email from me before tomorrow.
xoxoxo,
-John
Sunday, February 8, 2009
Kirk Update 2.8.09, Mid Day
Hello!
I've really about had it with doctors. In direct contrast with everything we've been told in the last 24 hours, Kirk is awake and doing much much better. Not great, but still better.
Roffelle (I've been spelling it Raphael...I didn't know!) was there all night...ALL NIGHT...reading scripture to Kirk and keeping watch over him. The nurses told him that we had left minutes before, so this is around 1am last night. So he starts reading, and Kirk coughs and opens his eyes a crack. Roffelle is shocked and asks Kirk if he's there. Kirk raises his right hand for their handshake/snap they do. Freaking adorable.
It was after this that Roffelle called Tiffany. She sang to him on the phone and told him she loved him. He scratched out a weak "I love you too". Roffelle said he was ready to run up and down the halls high five-ing nurses. They spent the rest of the night in and out of sleep and watching anime cartoons.
I got there early this morning. Close to 9:00. Kirk was awake and greeted me with eye contact. He's not much for talking, but he'll respond sometimes with a nod. He's pretty grumpy as you might expect. His sole motivation for moving is to pull his oxygen mask off. Once he wasn't content to just have it off his mouth. He kept tugging at it until Roffelle and I took it off of him. Other times he'll try messing with his IV needle and you have to swat his hand away.
Nurse Kathy is his day nurse. She came in to wash Kirk and change his bed. Let me tell you, she quickly recruited us to help move his body. He weighs SO MUCH when he can't help. It took all three of us multiple tries to slide him 2 inches back to line his hips up with where they are supposed to be for his bed. This is the real clincher for whether or not Kirk will return home or be in a hospice. Without 3-4 trained dudes on call, the Lawrences will not be able to move him.
Then Kathy got out a dentist-like sucker device to catch any phlegm/blood Kirk could cough up. After a couple tries his breathing became much more normal. No more Darth Vader.
Diana and the rest of the family and came a little while after. They didn't skip finding clean clothes and a shower before coming like I did. Heh. They were just SO PLEASED to see Kirk with his eye open and out of his semi-coma. Tiffany sang a little to him while Nikki rubbed his head. Tim and Deborah unloaded hugs and kisses.
Roffelle and I inspected the TV in his room and confirmed that there were video inputs on the back. Against the wishes of the nurse staff we stepped out to the Lawrence house to get a dvd player and some movies.
While we were gone, Tiffany called and requested food for her and the baby. We stopped to pick up subs on the way back. Then, once we got back to the room, we had to have someone hold the subs in the hallway before Kirk saw or smelled them and wanted to eat them. The nurses have approved ice chips and POSSIBLY...popcicles. So we'll work on that first.
Before eating our lunch in the cafeteria we got the dvd player hooked up and started Trading Places for him. He maintains pretty good focus on the TV though he occasionally falls asleep a little.
I'm convinced that Kirk's doctors have no idea what to do. His indian neurologist came in the morning. He smiled and shrugged at me as he walked in. Hell, I can do that. Where's my PHD? I think part of the problem is just inexperience with cancer patients that are so young. They tell us that by all science and logic, Kirk should be steadily on his way out. They've discussed the possibility of doing further testing/scanning to determine the progress of the tumors, but so far have concluded that there is no point since they won't be doing chemo treatment, etc.
Kirk is very confortable and well medicated, but if he isn't going to require the full services of the hospital for testing, he will get moved to a hospice. I was sorta hoping we could skip that step, if for no other reason, for the sake of the Lawrences emotions. They need to see Kirk at peace and not fighting and strugling to stay alive.
It's nap time, but I'll be back at the hospital later and will give a new update late tonight.
-John
I've really about had it with doctors. In direct contrast with everything we've been told in the last 24 hours, Kirk is awake and doing much much better. Not great, but still better.
Roffelle (I've been spelling it Raphael...I didn't know!) was there all night...ALL NIGHT...reading scripture to Kirk and keeping watch over him. The nurses told him that we had left minutes before, so this is around 1am last night. So he starts reading, and Kirk coughs and opens his eyes a crack. Roffelle is shocked and asks Kirk if he's there. Kirk raises his right hand for their handshake/snap they do. Freaking adorable.
It was after this that Roffelle called Tiffany. She sang to him on the phone and told him she loved him. He scratched out a weak "I love you too". Roffelle said he was ready to run up and down the halls high five-ing nurses. They spent the rest of the night in and out of sleep and watching anime cartoons.
I got there early this morning. Close to 9:00. Kirk was awake and greeted me with eye contact. He's not much for talking, but he'll respond sometimes with a nod. He's pretty grumpy as you might expect. His sole motivation for moving is to pull his oxygen mask off. Once he wasn't content to just have it off his mouth. He kept tugging at it until Roffelle and I took it off of him. Other times he'll try messing with his IV needle and you have to swat his hand away.
Nurse Kathy is his day nurse. She came in to wash Kirk and change his bed. Let me tell you, she quickly recruited us to help move his body. He weighs SO MUCH when he can't help. It took all three of us multiple tries to slide him 2 inches back to line his hips up with where they are supposed to be for his bed. This is the real clincher for whether or not Kirk will return home or be in a hospice. Without 3-4 trained dudes on call, the Lawrences will not be able to move him.
Then Kathy got out a dentist-like sucker device to catch any phlegm/blood Kirk could cough up. After a couple tries his breathing became much more normal. No more Darth Vader.
Diana and the rest of the family and came a little while after. They didn't skip finding clean clothes and a shower before coming like I did. Heh. They were just SO PLEASED to see Kirk with his eye open and out of his semi-coma. Tiffany sang a little to him while Nikki rubbed his head. Tim and Deborah unloaded hugs and kisses.
Roffelle and I inspected the TV in his room and confirmed that there were video inputs on the back. Against the wishes of the nurse staff we stepped out to the Lawrence house to get a dvd player and some movies.
While we were gone, Tiffany called and requested food for her and the baby. We stopped to pick up subs on the way back. Then, once we got back to the room, we had to have someone hold the subs in the hallway before Kirk saw or smelled them and wanted to eat them. The nurses have approved ice chips and POSSIBLY...popcicles. So we'll work on that first.
Before eating our lunch in the cafeteria we got the dvd player hooked up and started Trading Places for him. He maintains pretty good focus on the TV though he occasionally falls asleep a little.
I'm convinced that Kirk's doctors have no idea what to do. His indian neurologist came in the morning. He smiled and shrugged at me as he walked in. Hell, I can do that. Where's my PHD? I think part of the problem is just inexperience with cancer patients that are so young. They tell us that by all science and logic, Kirk should be steadily on his way out. They've discussed the possibility of doing further testing/scanning to determine the progress of the tumors, but so far have concluded that there is no point since they won't be doing chemo treatment, etc.
Kirk is very confortable and well medicated, but if he isn't going to require the full services of the hospital for testing, he will get moved to a hospice. I was sorta hoping we could skip that step, if for no other reason, for the sake of the Lawrences emotions. They need to see Kirk at peace and not fighting and strugling to stay alive.
It's nap time, but I'll be back at the hospital later and will give a new update late tonight.
-John
Kirk Update - 2.8.09, Kirk's Awake
People, I don't know much. Other than Kirk is AWAKE.
Tiffany just called me. She said that after we left the hospital, Raphael went back over to the hospital to be with Kirk and read scripture. And sometime around 3am, Kirk woke up and started watching anime cartoons with him. Raphael calls Tiffany and she tells Kirk she loves him, etc. Through swollen tongues and scratchy throats he manages an "I love you too".
Why I'm just hearing about this NOW is something I can beat someone up about once I'm there.
So, Kirk is defying medical science right now. Diana just pointed out that "of course Kirk would go zombie on us". I'm getting my stuff together and will report back to Kristina or Diana who can email you guys while I'm out.
-John
Tiffany just called me. She said that after we left the hospital, Raphael went back over to the hospital to be with Kirk and read scripture. And sometime around 3am, Kirk woke up and started watching anime cartoons with him. Raphael calls Tiffany and she tells Kirk she loves him, etc. Through swollen tongues and scratchy throats he manages an "I love you too".
Why I'm just hearing about this NOW is something I can beat someone up about once I'm there.
So, Kirk is defying medical science right now. Diana just pointed out that "of course Kirk would go zombie on us". I'm getting my stuff together and will report back to Kristina or Diana who can email you guys while I'm out.
-John
Saturday, February 7, 2009
Kirk Update - 2.7.09 Evening
First let me correct myself. This morning I said they did an MRI. I misunderstood Miss Debbie. Though they had planned on doing the MRI, they decided not to because they knew that it would only confirm what was obvious: the tumor was growing, putting pressure on his circulatory system, and depleting his brain function.
The strategy for today has been stability and comfort. They did pump his lungs again today to draw out any remaining blood. After, his breathing got a little deeper and much much less "wet" sounding.
I stayed by Kirk's bed for somewhere between 30 min to an hour. He makes small movements...like you might if you were dreaming...but occasionally very deliberate ones. For instance his oxygen mask was slipping off his chin. I offered to help get it back on and before I could touch the mask, he turned his head away from me. Stubborn to the end. I read him all my text messages and emails from everyone and let him know about all the people on this email list. I truly believe he was there inside his body listening. He seemed it. I was glad to be able to give him a deliberate time to think of all of you.
The rest of the day I sat in the waiting room with the family. We talked for HOURS today. About Kirk, about Tiffany's pregnancy, about modern education and the state of the country. These people are amazing and I'm so glad to have had the opportunity to be with them through these times.
Sometime around 6:30 the hospital staff has a shift change. Kirk's doctors convened and looked at his statistics. They called Tim and Deborah back to give them the bad news...
~The Bad News~
Kirk cannot have another seizure. If he does, it will likely be his last. So to prevent this, they've nearly doubled his anti-seizure medication. WHICH, is weakening his already weakened (by the seizures) heart. They can't take him off the medication unless he comes to. And if he goes into cardiac arrest, he's DNR. Kirk's balancing on the edge of a knife and the doctors don't think he will live to see the morning.
Deborah Lawrence is OFFICIALLY the strongest person I've ever witnessed.
She cried a great deal and led us in a prayer. A prayer for Kirk but primarily a prayer for the rest of us. She prayed for the strength to survive her son. And the strength to fight the devil that wants to break her down. She prayed for her children, her extended family, her children's unborn children and her bearded, white son.
I've only come home to write some email, grab some food and go back to the hospital. I just couldn't see myself sitting around the house under the circumstances.
I honestly hope Kirk can pass away soon and shed his "Chubbly Bubbly Suit" he's trapped in with comfort and with his family beside him. Should he stay in this state for very long it will be a tragedy for the hearts and minds of everyone. We started this in October and 5 months is a long time to have to hold your breath.
I'll continue to keep everyone updated and, should the inevitable happen, be assigning party-planning responsibilities. Gather ye sour patch kids while ye may.
-John
The strategy for today has been stability and comfort. They did pump his lungs again today to draw out any remaining blood. After, his breathing got a little deeper and much much less "wet" sounding.
I stayed by Kirk's bed for somewhere between 30 min to an hour. He makes small movements...like you might if you were dreaming...but occasionally very deliberate ones. For instance his oxygen mask was slipping off his chin. I offered to help get it back on and before I could touch the mask, he turned his head away from me. Stubborn to the end. I read him all my text messages and emails from everyone and let him know about all the people on this email list. I truly believe he was there inside his body listening. He seemed it. I was glad to be able to give him a deliberate time to think of all of you.
The rest of the day I sat in the waiting room with the family. We talked for HOURS today. About Kirk, about Tiffany's pregnancy, about modern education and the state of the country. These people are amazing and I'm so glad to have had the opportunity to be with them through these times.
Sometime around 6:30 the hospital staff has a shift change. Kirk's doctors convened and looked at his statistics. They called Tim and Deborah back to give them the bad news...
~The Bad News~
Kirk cannot have another seizure. If he does, it will likely be his last. So to prevent this, they've nearly doubled his anti-seizure medication. WHICH, is weakening his already weakened (by the seizures) heart. They can't take him off the medication unless he comes to. And if he goes into cardiac arrest, he's DNR. Kirk's balancing on the edge of a knife and the doctors don't think he will live to see the morning.
Deborah Lawrence is OFFICIALLY the strongest person I've ever witnessed.
She cried a great deal and led us in a prayer. A prayer for Kirk but primarily a prayer for the rest of us. She prayed for the strength to survive her son. And the strength to fight the devil that wants to break her down. She prayed for her children, her extended family, her children's unborn children and her bearded, white son.
I've only come home to write some email, grab some food and go back to the hospital. I just couldn't see myself sitting around the house under the circumstances.
I honestly hope Kirk can pass away soon and shed his "Chubbly Bubbly Suit" he's trapped in with comfort and with his family beside him. Should he stay in this state for very long it will be a tragedy for the hearts and minds of everyone. We started this in October and 5 months is a long time to have to hold your breath.
I'll continue to keep everyone updated and, should the inevitable happen, be assigning party-planning responsibilities. Gather ye sour patch kids while ye may.
-John
Kirk Update - 2.7.09
I'm about to head out to the hospital. I've talked to Deborah. The neurologist has seen Kirk and says that he has brain function. This was confirmed by Kirk trying to take out his mouth guard and remove his oxygen mask in the night. Two things he's uncomfortable wearing, I think.
However.
The MRI came back and showed that the cancer is pretty much running rampant. This would explain why Kirk hasn't opened his eyes at all, but still shows enough brain function to do so. His doctors remain amazed that he is still with us at all and continue to prepare Kirk's family for the worst. Kirk's heart is significantly weakened, and should he go into cardiac arrest he's DNR, as we all know.
Soooooo, I'll be relaying all kinds of messages to him today. Anything specific you'd like him to know, you can text me today. Again, more info as it's available. Get the torches of Minas Tirith ready. There's no telling when we'll have to put out The Call.
-John
However.
The MRI came back and showed that the cancer is pretty much running rampant. This would explain why Kirk hasn't opened his eyes at all, but still shows enough brain function to do so. His doctors remain amazed that he is still with us at all and continue to prepare Kirk's family for the worst. Kirk's heart is significantly weakened, and should he go into cardiac arrest he's DNR, as we all know.
Soooooo, I'll be relaying all kinds of messages to him today. Anything specific you'd like him to know, you can text me today. Again, more info as it's available. Get the torches of Minas Tirith ready. There's no telling when we'll have to put out The Call.
-John
Subscribe to:
Posts (Atom)