Like this. I can barely write now. My nails have grown so since I have been off chemo, I wish my boobs grew with then. Sorry it has been so long, lots has been happening, as you can imagine. I am tucked into my hospital bed at home near our bed,just a few bodies apart.ugh. I feel like a prisoner, I have to hook atleast two tubes to the bed everynight. lots of changing dressings on wounds,taking care of my port-a-cath and pic line. I know this is overwhelming for those of you not medical.
The first few days home I was pretty out of it, sleeping a lot. I finally came around about Wednesday I believe. A lot of this is hazzy! I am weak, weaker than I have ever been since a surgery! That shocked me. I am getting stronger but I still can't just get up and go somewhere, I have to have help. And the stairs,yikes two guys have to firefighter training lift me like my sister the fabulous, all knowing Physical Therapist taught us. Thanks dre!. So this is my life at the moment.
I haven't had the chance to read my email,actually I'm kind of scared to see how many there are. Thank you all for your support. Thank you to the neighborhood for the blue ribbons on all entrance trees! You all amaze me more and more every day.
As you all now I am probably reaching the end of this battle. I continue to get stronger and still doing most of what I can to continue to be here with you all. I know a lot of people have contacted my immediately family to find a time to come and see me. I am overwhelmed with outpouring of love. I need to take control of it because it is getting too hard for everyone. So to try to get this organized I would appreciate if you would call ME, not my husband, my parents or my sister. I am going to try to be in control of this one. I will give you all my information and we can make plans.
Phone number 913-226-0171 (If I don't answer I will get back to you, and please don't abuse this number)
Email: shawndrab@hotmail.com (I am overwhelmed with them so phone might be easier)
Thank you for all your patience, trust me I am just regaining the happenings in my world and what has happened these past several weeks/months. I have missed you and look forward to hearing from you!
shawndra
Sunday, February 8, 2009
Tuesday, February 3, 2009
Home at Last
-- Tuesday Evening --
After a long three week stay at St. Josephs Hospital, we're home at last. As an anonymous commentor mentioned, her care is now in the hands of KC Hospice, although the immediate family is still very much involved in the day-to-day activities. Today, Misty, an RN from KC Hospice, spent approximately three hours with us, doing all the things Shawndra needs. There are so many tubes now, that it can be overwhelming. I'm happy to say that her pain is under control, enough so that she walked from our bedroom to Ella's playroom and back this afternoon.
A lot of people complain about health insurance premiums. Perhaps some of that is warranted, but one thing to remember is, when something devastating happens to a family member, like it has for Shawndra, the coverage is there when you need it. I cannot give enough praise to Blue Cross Blue Shield of Texas. Not once has a claim been denied. And, although private nursing is not offered as part of the health insurance policy, the company has approved 40 hours this week, for a private nurse to help us. That's in addition to hospice. We're blessed.
Since this is Mommy's first day home, in a long time, Ella decided she didn't want to go to daycare/school this morning. She was a good girl for her grandmother and me.
-- Wednesday Evening --
Sorry, I didn't have a chance to finish this post last night. Today Shawndra slept until 4PM. It's now almost 7PM. Three hours is a long time for her to be awake, we're all cherishing it. Gary (Shawndra's father) and I moved furniture in the master bedroom to accomodate the hospital bed. This bed is much more condusive for when Shawndra is sleeping and awake, since it moves in a lot of different ways. Currently, Ella is lying between Shawndra's legs, watching Scooby Doo.
A few of the "Lake House Ladies" surprised Shawndra with stories of receiving tattoos of butterflies on their ankles (to honor Shawndra). This past Saturday, I met three ladies at Irezuma's to videotape the event. There was laughter, grins of pain, but all in all, an enjoyable, especially bonding experience. I too was tattooed on the shoulder, but with a custom design, created by Mark (at Irezuma). This was a rather impromtu decision. Like Mark said, every tattoo has a story behind it. I'll explain more of the symbolism my tattoo has on another day. (And, yes, a photo. Perhaps even a video.)
Well, it's time to prepare Shawndra's evening "cocktail" as we call it. Thank you for your prayers. As far as visits are concerned, yes, she welcomes them, but please call well in advance so we can plan for it. We are also considering the idea of having set times on certain days for "open house" visiting. That may work better. What say all of you?
Good night, all. I'm anxious to get some REM sleep tonight. This brain of mine isn't firing on all cylinders right now...
- Doug
After a long three week stay at St. Josephs Hospital, we're home at last. As an anonymous commentor mentioned, her care is now in the hands of KC Hospice, although the immediate family is still very much involved in the day-to-day activities. Today, Misty, an RN from KC Hospice, spent approximately three hours with us, doing all the things Shawndra needs. There are so many tubes now, that it can be overwhelming. I'm happy to say that her pain is under control, enough so that she walked from our bedroom to Ella's playroom and back this afternoon.
A lot of people complain about health insurance premiums. Perhaps some of that is warranted, but one thing to remember is, when something devastating happens to a family member, like it has for Shawndra, the coverage is there when you need it. I cannot give enough praise to Blue Cross Blue Shield of Texas. Not once has a claim been denied. And, although private nursing is not offered as part of the health insurance policy, the company has approved 40 hours this week, for a private nurse to help us. That's in addition to hospice. We're blessed.
Since this is Mommy's first day home, in a long time, Ella decided she didn't want to go to daycare/school this morning. She was a good girl for her grandmother and me.
-- Wednesday Evening --
Sorry, I didn't have a chance to finish this post last night. Today Shawndra slept until 4PM. It's now almost 7PM. Three hours is a long time for her to be awake, we're all cherishing it. Gary (Shawndra's father) and I moved furniture in the master bedroom to accomodate the hospital bed. This bed is much more condusive for when Shawndra is sleeping and awake, since it moves in a lot of different ways. Currently, Ella is lying between Shawndra's legs, watching Scooby Doo.
A few of the "Lake House Ladies" surprised Shawndra with stories of receiving tattoos of butterflies on their ankles (to honor Shawndra). This past Saturday, I met three ladies at Irezuma's to videotape the event. There was laughter, grins of pain, but all in all, an enjoyable, especially bonding experience. I too was tattooed on the shoulder, but with a custom design, created by Mark (at Irezuma). This was a rather impromtu decision. Like Mark said, every tattoo has a story behind it. I'll explain more of the symbolism my tattoo has on another day. (And, yes, a photo. Perhaps even a video.)
Well, it's time to prepare Shawndra's evening "cocktail" as we call it. Thank you for your prayers. As far as visits are concerned, yes, she welcomes them, but please call well in advance so we can plan for it. We are also considering the idea of having set times on certain days for "open house" visiting. That may work better. What say all of you?
Good night, all. I'm anxious to get some REM sleep tonight. This brain of mine isn't firing on all cylinders right now...
- Doug
Tuesday, January 27, 2009
17th Day in Hospital
It's hard to imagine that we arrived 17 days ago. About half of those days have been a blur, and I apologize for not updating everyone with the situation at hand...
Shawndra is resting, but still experiences various levels of pain throughout the day. Today, Dr. Morgan is going to repeat the pain block procedure she had approximately one week ago. The procedure "degenerates" nerve endings present in the abdomen. Over the last 3-4 days, her kidneys have recovered, thanks to a bi-lateral nephrostomy.
There are days when Shawndra is very alert, talking, watching TV, and visiting with family, and a few friends. Then there are days (like yesterday) where the pain is so great, that the opiates needed to alleviate that pain, puts her into a deep sleep.
With the help of a social worker at the hospital, the family has been working to get Shawndra home, and in the care of home hospice. An inpatient facility was discussed, as well, but was quickly rejected after learning that TPN and IV fluids are NOT allowed in those type of facilities. Once at home, her primary care will be in the hands of us -- the immediate family -- with occasional visits from home hospice, and of course, other family, and friends.
Ella is feeling much better. She came down flu-like symptoms the middle of last week. She told me several times that she "doesn't like to throw up." Bless her heart.
I was thinking last night that one day, I'm going to print Shawndra's BLOG, in its entirety, have it laminated, and bound, for Ella to read... Ella, your mommy IS strong, kind hearted, and loving. She loves you all the time. These photos, stories, and thoughts are timeless.
I just asked Shawndra what she would like for me to write. Her reply was "tell everyone that I miss them".
Please pray for her comfort, and for our family. And thanks goes out to all of you who continue to help in so many ways.
- Doug
Wednesday, January 21, 2009
Update
Here's my most recent email update:
Hello all-
So, a lot has happened since my last email. Shawndra has remained out of ICU, but not out of the OR (operating room). She did have her stints replaced. Then they put in an epidural to try to help with pain. Then she went back in for a 2nd stint to be placed on the Rt side, her better functioning kidney.
Shawndra gave us a little scare over the end of the week/weekend when her creatinine started to increase. This is not necessarily a good sign in terms of kidney function. She was also still having pain. So, they performed a superior hypogastric pain block which has helped some with the pain, but not eliminated the pain yet. Shawndra's pain doctor, Dr. Morgan is so awesome. He is always thinking of something to try to help with the pain and manage her case so well. He is trying so hard for Shawndra, it's so kind.
Yesterday, Shawndra had perked up a bit, smiled, was awake more, made a few jokes/sly remarks - much more the Shawndra we know. She is still having edema in her legs, so not getting up as much as before. Today, she was up/awake most of the day but was starting to have some increased pain some this evening again. The doctors are trying to wean off of most all the tubes and discuss transitioning her. We are still undecided as to the course of hospital stay and then on from there at this time. Lots of things have been suggested, but no decision yet. She and the family will help decide when we need to.
In closing (don't I feel like the president today - Ha!), I want to repeatedly thank everyone for their concern, committment, support, and prayers. I know it's hard to not be able to do anything but pray. But you know what - that is one of the MOST important things that you all can offer Shawndra, Doug, Ella, my parents, Doug's parents, Doug's family, and my family. I am following this with Luke 11:8-10 that was sent to me in one of our pastor's weekly devotional emails. It seems fitting at this point in time. I appreciate all of you who have been supported my emails and who take the verses and follow through with reading and studying them. That is awesome!!
In Luke 11:8-10 out of the New Living Translation, here is what we read: 8 But I tell you this—though he won't do it for friendship's sake, IF YOU KEEP KNOCKING LONG ENOUGH, he will get up and give you whatever you need because of your shameless persistence.9 "And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.10 For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.
Lord, may your ears, eyes, heart and door be open today and everyday that we pray for Shawndra. We continue to pray for strength for her, Doug, and our families. We keep knocking asking for Shawndra's pain to be resolved/eliminated. God, we give you the glory for all the successes that we've had and seen in this journey. We ask that You keep showing us YOUR work. We boldly proclaim a MIRACLE in Shawndra's name. Father, we know that this will continue to be an emotional journey and we want the highs to be ever higher and the lows to be less. Thank you for reminding us to lean on you. For some of us are still walking next to you, but we know that you are carrying some of us as well. Thank you for answering our prayers and opening the door as we continue to knock. Bless all the people who read this and who comprise Shawndra's support community/prayer warriors.
In Jesus name. AMEN
In Christ,
Andrea
(Shawndra's sister)
Hello all-
So, a lot has happened since my last email. Shawndra has remained out of ICU, but not out of the OR (operating room). She did have her stints replaced. Then they put in an epidural to try to help with pain. Then she went back in for a 2nd stint to be placed on the Rt side, her better functioning kidney.
Shawndra gave us a little scare over the end of the week/weekend when her creatinine started to increase. This is not necessarily a good sign in terms of kidney function. She was also still having pain. So, they performed a superior hypogastric pain block which has helped some with the pain, but not eliminated the pain yet. Shawndra's pain doctor, Dr. Morgan is so awesome. He is always thinking of something to try to help with the pain and manage her case so well. He is trying so hard for Shawndra, it's so kind.
Yesterday, Shawndra had perked up a bit, smiled, was awake more, made a few jokes/sly remarks - much more the Shawndra we know. She is still having edema in her legs, so not getting up as much as before. Today, she was up/awake most of the day but was starting to have some increased pain some this evening again. The doctors are trying to wean off of most all the tubes and discuss transitioning her. We are still undecided as to the course of hospital stay and then on from there at this time. Lots of things have been suggested, but no decision yet. She and the family will help decide when we need to.
In closing (don't I feel like the president today - Ha!), I want to repeatedly thank everyone for their concern, committment, support, and prayers. I know it's hard to not be able to do anything but pray. But you know what - that is one of the MOST important things that you all can offer Shawndra, Doug, Ella, my parents, Doug's parents, Doug's family, and my family. I am following this with Luke 11:8-10 that was sent to me in one of our pastor's weekly devotional emails. It seems fitting at this point in time. I appreciate all of you who have been supported my emails and who take the verses and follow through with reading and studying them. That is awesome!!
In Luke 11:8-10 out of the New Living Translation, here is what we read: 8 But I tell you this—though he won't do it for friendship's sake, IF YOU KEEP KNOCKING LONG ENOUGH, he will get up and give you whatever you need because of your shameless persistence.9 "And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.10 For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.
Lord, may your ears, eyes, heart and door be open today and everyday that we pray for Shawndra. We continue to pray for strength for her, Doug, and our families. We keep knocking asking for Shawndra's pain to be resolved/eliminated. God, we give you the glory for all the successes that we've had and seen in this journey. We ask that You keep showing us YOUR work. We boldly proclaim a MIRACLE in Shawndra's name. Father, we know that this will continue to be an emotional journey and we want the highs to be ever higher and the lows to be less. Thank you for reminding us to lean on you. For some of us are still walking next to you, but we know that you are carrying some of us as well. Thank you for answering our prayers and opening the door as we continue to knock. Bless all the people who read this and who comprise Shawndra's support community/prayer warriors.
In Jesus name. AMEN
In Christ,
Andrea
(Shawndra's sister)
Saturday, January 17, 2009
Pain Block Procedure
Dr. Morgan just finished with the pain block procedure. I do not recall the name of the procedure, but it has to do with injecting alcohol into a region of nerves that control sending pain messages to the brain. This procedure is somewhat permanent, in that if enough of the nerves "receive" the alcohol, they will forever block those pain messages. I know what you're thinking... how will this affect her ability to walk. Luckily, it will have NO affect. She should have all feeling in her legs. We won't know how affective this procedure was until later this evening. The amount of pain medication being given via the epidural pump has been turned down. The hope is the epidural can be removed completely. We're so grateful that Dr. Morgan decided to do this procedure today, instead of Monday.
Shawndra is still quite weak, and prefers no visitors. I'll be staying with Shawndra in the hospital over the weekend. Ella is planning on having fun at Grandma's house. Shawndra and I have a lot to discuss this weekend (or early next week) about the next steps to take for her care. Thank you for your prayers.
- Doug
Shawndra is still quite weak, and prefers no visitors. I'll be staying with Shawndra in the hospital over the weekend. Ella is planning on having fun at Grandma's house. Shawndra and I have a lot to discuss this weekend (or early next week) about the next steps to take for her care. Thank you for your prayers.
- Doug
Thursday, January 15, 2009
Video of Shawndra as a Teenager
A BLOG commentor, from the previous post, asked for the "sharky" video. I've seen that video, once, with Shawndra, at her parents house, during our courting days, but not since. I need to hit up Gary & Carolyn for that video! In the absence of that video, let me present you with Shawndra, Dustin, and Andrea as the Three Amigos. Thanks goes out to Dustin's father, Dave, who provided the video clip from the old VHS days. Shawndra doesn't know I'm posting the video... hopefully she approves. Hehehehehe. Oh, and Dustin & Andrea... I know you two wouldn't approve, which is why I didn't ask... ehehehehehehe. Enjoy!
Also some photos from our ski trip last week are below. (Click on the photos, if you wish to see them in large format.) Goodnight. - Doug
Also some photos from our ski trip last week are below. (Click on the photos, if you wish to see them in large format.) Goodnight. - Doug
 | Ella playing dress-up. What a princess! |
 | Aspen Airport. During take-off, Ella shouted "we're going so fast!" |
 | Look at my huge gloves! |
 | Ella & Mommy With Big Smiles |
Wednesday, January 14, 2009
Shawndra is out of ICU! The epidural will remain to control pain. I'm back at work today. Getting ready to pick up Ella at daycare. She hasn't seen mommy since Sunday morning, so we're going to eat dinner and head over to the hospital.
This will be a short post, since I need to run. I'm hoping Shawndra can BLOG soon from the hospital. Thanks everyone for your support.
- Doug
Oh, I may post some photos, video, etc. tonight after Ella goes to sleep. I have a feeling I'll be doing that work in bed, while she falls asleep by my side. :)
This will be a short post, since I need to run. I'm hoping Shawndra can BLOG soon from the hospital. Thanks everyone for your support.
- Doug
Oh, I may post some photos, video, etc. tonight after Ella goes to sleep. I have a feeling I'll be doing that work in bed, while she falls asleep by my side. :)
Tuesday, January 13, 2009
I'm Bored
"I'm bored." were Shawndra's first words when I arrived to the ICU this morning. Those words were the most she has spoken in more than 24 hours, and hearing them was such a relief. Now that Shawndra is relatively pain free, Doc Morgan "turned down" the pain drugs. As a result, she's more coherent today. Although she's still fighting an infection and the iliostomy isn't yet functioning, she's in much better spirits. Having suction hooked up to her G tube is slowly relieving pressure in her abdomen.
As planned, her ureteral stents where replaced this morning. Unfortunately, though, the stents are not source of what is causing the pain. Lots of stool in the intestines and tumor pressing against nerves are the reasons.
So back to the "I'm bored" comment, Shawndra made... I asked her if she wanted to play Yahtzee, knowing she would smile a bit. (A little history to that comment: two years ago, after her first cancer surgery, we played Yahtzee in her hospital room. She kicked my butt.) Instead I turned on the radio in the ICU room and tuned to 105.1 Jack FM. "Turn Up The Radio" filled the room (you remember Autograph, the 80s band?). I sang that to her, well, just the chorus, cause I admit, I don't know any other lyric. :) She grinned a smile. I suppose she didn't like my singing (or my breath).
Gary & Carolyn, Shawndra's parents, decided early yesterday morning to cut their vacation short and start the long trip home from Snowmass. I'm glad they did. It's comforting that they're here now with Shawndra, and me.
Ella woke up asking for mommy this morning. She slept in mommy's spot in our bed last night. I was too tired at 8:30 PM last night to lay on the hard floor in her room for an hour, waiting for her to fall asleep, so I just told her that last night was a special night, and she got to sleep in "mommy & daddy's bed". Hmmmm, seems like there are a lot of special nights these days. So when Ella stated "mommy is getting better in the hospital", I had a difficult time coming up with a reply. Is she really getting better? I don't even remember what I said... I think it was something to the affect that "mommy loves you all the time" -- from the "Love You All The Time" book. Ella loves that book, and mommy read it many times to her.
During Dr. rounds this evening, we'll ask Dr. Morgan about moving her out of ICU and into a room. After a room... who knows. A lot of options have been discussed. As Dr. Morgan stated yesterday, you have to live 1/2 day at a time. I like that phrase.
My sister, Krissy, "celebrated" her 35th birthday yesterday, hanging out with me in the ICU. My mother was also here with me. Thank you two. I appreciate your support.
Thanks for your comments and prayers. Currently, we're just taking it 1/2 day at a time...
- Doug
As planned, her ureteral stents where replaced this morning. Unfortunately, though, the stents are not source of what is causing the pain. Lots of stool in the intestines and tumor pressing against nerves are the reasons.
So back to the "I'm bored" comment, Shawndra made... I asked her if she wanted to play Yahtzee, knowing she would smile a bit. (A little history to that comment: two years ago, after her first cancer surgery, we played Yahtzee in her hospital room. She kicked my butt.) Instead I turned on the radio in the ICU room and tuned to 105.1 Jack FM. "Turn Up The Radio" filled the room (you remember Autograph, the 80s band?). I sang that to her, well, just the chorus, cause I admit, I don't know any other lyric. :) She grinned a smile. I suppose she didn't like my singing (or my breath).
Gary & Carolyn, Shawndra's parents, decided early yesterday morning to cut their vacation short and start the long trip home from Snowmass. I'm glad they did. It's comforting that they're here now with Shawndra, and me.
Ella woke up asking for mommy this morning. She slept in mommy's spot in our bed last night. I was too tired at 8:30 PM last night to lay on the hard floor in her room for an hour, waiting for her to fall asleep, so I just told her that last night was a special night, and she got to sleep in "mommy & daddy's bed". Hmmmm, seems like there are a lot of special nights these days. So when Ella stated "mommy is getting better in the hospital", I had a difficult time coming up with a reply. Is she really getting better? I don't even remember what I said... I think it was something to the affect that "mommy loves you all the time" -- from the "Love You All The Time" book. Ella loves that book, and mommy read it many times to her.
During Dr. rounds this evening, we'll ask Dr. Morgan about moving her out of ICU and into a room. After a room... who knows. A lot of options have been discussed. As Dr. Morgan stated yesterday, you have to live 1/2 day at a time. I like that phrase.
My sister, Krissy, "celebrated" her 35th birthday yesterday, hanging out with me in the ICU. My mother was also here with me. Thank you two. I appreciate your support.
Thanks for your comments and prayers. Currently, we're just taking it 1/2 day at a time...
- Doug
Monday, January 12, 2009
Maybe an Epidural Will Kick the Pain
Last night Dr. Morgan came back to the hospital to address Shawndra's unbearable pain. He put in an epidural and had her transferred to the ICU for monitoring. I spent the night at home, and took Ella to school/daycare this morning. Around 6:30AM, Ella awoke and called for me. I don't know what was different about this morning, but hearing her say "Daaaaddddyyyy" just made me smile. She really needs me right now.
Arriving to the hospital this morning, I was troubled to find out that Shawndra is still in pain. She's being given Hydromorphone/Dilaudid via her port-a-cath, and Ropivicaine via the epidural. She's built up quite a resistance to opiates. She's pretty much unconscious right now. Wow, what more can I say. I hate to see her suffer.
The ski trip to Snowmass was a lot of fun. Shawndra walked around and shopped the village stores a few evenings. Each year, Gary arranges for a photographer to take photos, quite early. I'll post one soon. I enjoyed snowboarding. Gary, Andrea, Greg, and I spent a lot of time together on the mountain. Thursday was sunny and beautiful.
One afternoon, after skiing, the parents and kids did some sledding. Ella was good for only one run because she and Daddy tumbled over. Shawndra took some video. I haven't seen it yet, but will post it, as well.
We're pretty much in limbo right now. Shawndra's ureteral stints are scheduled to be replaced tomorrow.
One more thing before I hit "save"...
For being only three years old, Ella has flown several times already. The take-off from Aspen (in a prop plane) was real fun for her though. There were only about 15 passengers on the plane. She was able to get all of them to chuckle by screaming "we're going soooooo fast!". Oh... Mommy took a pic of Ella and I on that plane. I'll post that too. Looks like I have some work to do. (Sorry boss... the ports for VPN access from the hospital are blocked, or I'd be doing real work. :)
- Doug
Arriving to the hospital this morning, I was troubled to find out that Shawndra is still in pain. She's being given Hydromorphone/Dilaudid via her port-a-cath, and Ropivicaine via the epidural. She's built up quite a resistance to opiates. She's pretty much unconscious right now. Wow, what more can I say. I hate to see her suffer.
The ski trip to Snowmass was a lot of fun. Shawndra walked around and shopped the village stores a few evenings. Each year, Gary arranges for a photographer to take photos, quite early. I'll post one soon. I enjoyed snowboarding. Gary, Andrea, Greg, and I spent a lot of time together on the mountain. Thursday was sunny and beautiful.
One afternoon, after skiing, the parents and kids did some sledding. Ella was good for only one run because she and Daddy tumbled over. Shawndra took some video. I haven't seen it yet, but will post it, as well.
We're pretty much in limbo right now. Shawndra's ureteral stints are scheduled to be replaced tomorrow.
One more thing before I hit "save"...
For being only three years old, Ella has flown several times already. The take-off from Aspen (in a prop plane) was real fun for her though. There were only about 15 passengers on the plane. She was able to get all of them to chuckle by screaming "we're going soooooo fast!". Oh... Mommy took a pic of Ella and I on that plane. I'll post that too. Looks like I have some work to do. (Sorry boss... the ports for VPN access from the hospital are blocked, or I'd be doing real work. :)
- Doug
Sunday, January 11, 2009
Pain issues...
Hi Everyone...It's not Shawndra, but Angie. Shawndra asked me to blog to let you all know that she is on her way to the hospital to be admitted for pain issues. She has increased the pain patches on her back, is using the fentanyl suckers and some IV fentanyl at home but it's not cutting it right now. Dr. Morgan is admitting her and hopefully she will also get her stents replaced while she is there so she doesn't have to go back for that! It seems like she usually has some pain from that procedure so it would be good to get it under control there. SO...please pray that Dr. Morgan can find that magic amount of medicine that allows her to be comfortable but not knock her out!!
They just got back from a ski trip with Shawndra's family and it sounds like everyone had a great time. The snowy mountain picture is great!! They did have some drama on the way there with plane delays and a bus ride, but they made it there and made it back (with another delay, but no bus ride ). I got a text from Shawndra one day that Ella got "kicked out" of ski school-something about not wanting to wear the ski boots...;-) I'm still laughing about that because I can totally picture the "scene." Heehee...
I'm sure there was something else, but I'm stressed that my friend is in pain and that I can't do anything to help her (it's hard to be the friend and not the nurse-I'm used to just calling the docs and getting bigger doses and pain pumps, etc.) Please pray that they can get her pain under control and that she can come home soon!!!
Love you Shawndra B!!!
Angie
They just got back from a ski trip with Shawndra's family and it sounds like everyone had a great time. The snowy mountain picture is great!! They did have some drama on the way there with plane delays and a bus ride, but they made it there and made it back (with another delay, but no bus ride ). I got a text from Shawndra one day that Ella got "kicked out" of ski school-something about not wanting to wear the ski boots...;-) I'm still laughing about that because I can totally picture the "scene." Heehee...
I'm sure there was something else, but I'm stressed that my friend is in pain and that I can't do anything to help her (it's hard to be the friend and not the nurse-I'm used to just calling the docs and getting bigger doses and pain pumps, etc.) Please pray that they can get her pain under control and that she can come home soon!!!
Love you Shawndra B!!!
Angie
Thursday, January 1, 2009
Happy New Year!
Hello everyone- It is me, Shawndra, once again, yaaaa. Sorry I have not blogged, I haven't even touched my computer since my last post. I have been busy working on recovering, resting, and spending quality time with Ella and my family. Things have been very difficult physically and mentally for me since i have been home. My quality of life has gone down drastically since I have gotten this new tube in my stomach and TPN nutrition at night, etc. It is just overwhelming what all I have to do to live these days. I have also been thinking a lot about chemotherapy and not really wanting to continue with it. I have talked with my family who of course wants me to continue to pursue treatment but also doesn't want to see me suffer. I met with my oncologist this week to find out more about the chemotherapy he wants to put me on and if it is worth it. He was very good about telling me that either way I go is an okay option. The chemo sounds like it could have some bad side effects, horrible rash, as well as hair loss and then the general fatigue, diarrhea, etc. He said it works on about 10-20% of people and if it does work it works only for about 4-6 months. I still have my appointment but in my heart and my soul, I feel like I am done with treatment. It is not worth it to me to feel like that, make me sick and have my daughter watch me suffer, just lay there sleeping all the time with a miserable, possibly deforming rash where she couldn't recognize me. I want to live what time I have left in peace, if possible. I have been through too much! My oncologist also basically said that there is no cure especially at this stage so you all know what that means. I have a hard time writing it, tears swell up just mentioning it, but these are the facts! He promised that he and my pain doc will make sure I am comfortable from here on out and who knows how long that will be. I want to spend as much quality time with my family as I can!!
Any way you look at it, it sucks and doesn't seem fair! Atleast that is what I think. I don't want to give up on my family but I want to be at peace now. I can't live like this, I am basically home bound pretty much, except one small vacation I have coming up with my family. So this has been a very difficult time for me and I have spent many days and nights crying over all of this. This may also be why I haven't gotten on my computer. I am a pleaser and I don't want to let people down, so please respect my decision. You can't judge unless you have walked in my shoes and fought as much as I have fought but unfortunately it is a losing battle.
Today I was thinking that maybe God wants to take me home so people do get angry at him and hopefully through this somehow get closer to God and find comfort from him. Or maybe he needs me for a special duty, so look out everyone, you never know when I might reappear or how, hehe. Just kidding. Anyway, thank you for all your love and support. I will try to continue to keep up with the blog. I haven't read my email or the comments yet, so I have many to go through. You have all become my friends throughout this journey and I appreciate each one of you! I appreciate all the people from my past who have reconnected through the blog, thank you for thinking of me and reaching out. Thank you most of all to my close friends and my family who have been there for me through this very difficult time. I need you now more than ever! I will talk to you soon. I hope you all had a wonderful new year. We didn't even stay up to see midnight, just an old couple spending the night at home, it was perfect! I hope this year is a great year for all of you. I am going to try to make it as good of a year as I possibly can! all my love, shawndra
Any way you look at it, it sucks and doesn't seem fair! Atleast that is what I think. I don't want to give up on my family but I want to be at peace now. I can't live like this, I am basically home bound pretty much, except one small vacation I have coming up with my family. So this has been a very difficult time for me and I have spent many days and nights crying over all of this. This may also be why I haven't gotten on my computer. I am a pleaser and I don't want to let people down, so please respect my decision. You can't judge unless you have walked in my shoes and fought as much as I have fought but unfortunately it is a losing battle.
Today I was thinking that maybe God wants to take me home so people do get angry at him and hopefully through this somehow get closer to God and find comfort from him. Or maybe he needs me for a special duty, so look out everyone, you never know when I might reappear or how, hehe. Just kidding. Anyway, thank you for all your love and support. I will try to continue to keep up with the blog. I haven't read my email or the comments yet, so I have many to go through. You have all become my friends throughout this journey and I appreciate each one of you! I appreciate all the people from my past who have reconnected through the blog, thank you for thinking of me and reaching out. Thank you most of all to my close friends and my family who have been there for me through this very difficult time. I need you now more than ever! I will talk to you soon. I hope you all had a wonderful new year. We didn't even stay up to see midnight, just an old couple spending the night at home, it was perfect! I hope this year is a great year for all of you. I am going to try to make it as good of a year as I possibly can! all my love, shawndra
Wednesday, December 31, 2008
Shawndra is Feeling Better
Sorry for the delay in posting. Yes, Shawndra made it home a few days before Christmas, and was able to enjoy all the holiday festivities. The day before Christmas, Santa made a personal visit to Ella's house (thanks JJ for arranging that experience for Ella & Shawndra). She was so excited!
The Turner family has been laying pretty low at home the last week or so. Shawndra had an outpatient procedure today to change out the G-Tube to an easier-to-manage type.
Shawndra has mentioned wanting to post, but hasn't had much time to do so between all the resting and doctors visits.
- Doug
The Turner family has been laying pretty low at home the last week or so. Shawndra had an outpatient procedure today to change out the G-Tube to an easier-to-manage type.
Shawndra has mentioned wanting to post, but hasn't had much time to do so between all the resting and doctors visits.
- Doug
PEG switch out
Hello all - this is Andrea, Shawndra's sister. I wanted to let you know that Shawndra did come home for Christmas. We actually got to celebrate as our family on Saturday night. It was nice. Shawndra and Doug are getting used to being back home, adjusting to TPN, all the fun tubes, etc at home.
Anyway, I just wanted to let you all know that Shawndra went in today for a procedure to change out the PEG tube for a different diameter tube. Haven't heard anything yet except for that the procedure is done and she is back in a room, waiting for her to wake up more. The doc had not returned back to her room to discuss how things went when I was talking with my mom.
I want to personally thank you all for all of your support for our entire family. We are so blessed to have such a wonderful family, group of friends, and community of supporters. I took this post upon myself, so sorry Shawndra and Doug, hope you'll get back on soon!!
Wishing each of you a Happy New Year! May you have many blessings this new year!
With great appreciation and love,
Andrea
(Shawndra's sister)
Anyway, I just wanted to let you all know that Shawndra went in today for a procedure to change out the PEG tube for a different diameter tube. Haven't heard anything yet except for that the procedure is done and she is back in a room, waiting for her to wake up more. The doc had not returned back to her room to discuss how things went when I was talking with my mom.
I want to personally thank you all for all of your support for our entire family. We are so blessed to have such a wonderful family, group of friends, and community of supporters. I took this post upon myself, so sorry Shawndra and Doug, hope you'll get back on soon!!
Wishing each of you a Happy New Year! May you have many blessings this new year!
With great appreciation and love,
Andrea
(Shawndra's sister)
Monday, December 22, 2008
Are You Kidding Me?
You'll never guess where I'm writing this post from... yep, room 416 of 4 north at St. Josephs Hospital. I'm glad I waited almost all day to write this, cause I was pretty pissed off at the world come 1AM. Ah... but those two days at home were bliss, considering the alternative. (The weekend was also highlighted by the fact that I got to see one of my best friends, Kevin, who, with his wife, and 6 month old baby, were in town from San Diego for the holidays.)
Around 1:00 AM, Shawndra vomited quite a bit of bile, even though the PEG was opened up to relieve fluid and pressure. Thinking the PEG was blocked with a tiny piece of food, or something, I tried to flush her stomach with water, but that made it worse. Not one minute later, she vomited 60ml of almost clear water. And since she couldn't keep any medicines in her stomach, the break-through pain relief (oral Oxyfast) was all but useless. (Dang it! Why didn't we get a prescription for those morphine lollipops! My bad.) So fast forward to 2AM, and we're in the ER for fluids and pain relief. After three litres of fluid, things started working again. So... dehydration? Per the ER doc, it seemed as such, although the lab results didn't indicate that.
Without describing further details, I pray Shawndra can come home tomorrow. That's the tentative plan, at least.
Oh, and if by chance, the police officer from the KCMO or Leawood area remembers a maroon 4-door doing 80 MPH on State Line Road... I saw you do a quick u-turn to pursue, but thanks for not pulling me over. Hey, at least I had my hazard flashers on, right? Maybe I should be a part-time ambulance driver. My job would be to get the vehicle there, then somebody else drives it to the hospital.
Doug @ St. Joseph's Hospital, over and out.
Around 1:00 AM, Shawndra vomited quite a bit of bile, even though the PEG was opened up to relieve fluid and pressure. Thinking the PEG was blocked with a tiny piece of food, or something, I tried to flush her stomach with water, but that made it worse. Not one minute later, she vomited 60ml of almost clear water. And since she couldn't keep any medicines in her stomach, the break-through pain relief (oral Oxyfast) was all but useless. (Dang it! Why didn't we get a prescription for those morphine lollipops! My bad.) So fast forward to 2AM, and we're in the ER for fluids and pain relief. After three litres of fluid, things started working again. So... dehydration? Per the ER doc, it seemed as such, although the lab results didn't indicate that.
Without describing further details, I pray Shawndra can come home tomorrow. That's the tentative plan, at least.
Oh, and if by chance, the police officer from the KCMO or Leawood area remembers a maroon 4-door doing 80 MPH on State Line Road... I saw you do a quick u-turn to pursue, but thanks for not pulling me over. Hey, at least I had my hazard flashers on, right? Maybe I should be a part-time ambulance driver. My job would be to get the vehicle there, then somebody else drives it to the hospital.
Doug @ St. Joseph's Hospital, over and out.
Friday, December 19, 2008
Home For the Holidays!
Hello Everyone- It is good to be back blogging with you all. I've missed you. I have to say, I am making a lot of mistakes in my typing, which I am trying to correct but apologize. My fingers aren't need a little typing rehab,hehe.
Well I got home this afternoon, so it has been a long day. About ready for bed, but wanted to say hello. Thank you all for your love, prayers, words, etc. Please do not worry about what everyone says, i can handle anything anyone chooses to write on the blog (unless it is downright mean). I appreciate everyone's protection, but I am realistic, I know what is going on, for the most part. Even though i am optimistic for a major miracle to keep me alive for many years, I am aware of my situation. People are free to blog how they wish, and I appreciate them all.
Thank you to everyone who came to help me out, thank you to my family and most of all thank you Doug. Many men can't handle such a situation and he has not only stood by me but he has loved me unconditionally even when i struggle to love myself. He lifts me up when I am down and he endures so much to keep our family running when I am not there to help (with a lot of help from my parents on that on). He is incredible. I have received so many miracles already, Doug being one. I think I have already received my share of miracles. I will just continue my service to God and hope he will use me here. Only he knows....
Happy Holidays everyone, I wish you great days ahead with family, friends, love and lots of laughter. Your friend, Shawndra
Well I got home this afternoon, so it has been a long day. About ready for bed, but wanted to say hello. Thank you all for your love, prayers, words, etc. Please do not worry about what everyone says, i can handle anything anyone chooses to write on the blog (unless it is downright mean). I appreciate everyone's protection, but I am realistic, I know what is going on, for the most part. Even though i am optimistic for a major miracle to keep me alive for many years, I am aware of my situation. People are free to blog how they wish, and I appreciate them all.
Thank you to everyone who came to help me out, thank you to my family and most of all thank you Doug. Many men can't handle such a situation and he has not only stood by me but he has loved me unconditionally even when i struggle to love myself. He lifts me up when I am down and he endures so much to keep our family running when I am not there to help (with a lot of help from my parents on that on). He is incredible. I have received so many miracles already, Doug being one. I think I have already received my share of miracles. I will just continue my service to God and hope he will use me here. Only he knows....
Happy Holidays everyone, I wish you great days ahead with family, friends, love and lots of laughter. Your friend, Shawndra
Thursday, December 18, 2008
On Second Thought, No Chemo
Just a quick FYI that Shawndra decided this morning not to take the chemotherapy treatment today. She hasn't been feeling very well the last few days. We whole-heartedly support her decision.
The infectious disease doctor visited this morning. He suggested that one more round of antibiotics be given, tomorrow (Friday), before heading home.
Ella's daycare/school is throwing a Christmas party late this afternoon. The kids have been learning songs for quite some time now. Ella sang Jingle Bells on the way to school this morning. She's quite the performer, I must say! I plan to shoot video and throw it up on YouTube so we can embed it in the BLOG. (Sorry, I may have just geeked out a bit there...)
- Doug
The infectious disease doctor visited this morning. He suggested that one more round of antibiotics be given, tomorrow (Friday), before heading home.
Ella's daycare/school is throwing a Christmas party late this afternoon. The kids have been learning songs for quite some time now. Ella sang Jingle Bells on the way to school this morning. She's quite the performer, I must say! I plan to shoot video and throw it up on YouTube so we can embed it in the BLOG. (Sorry, I may have just geeked out a bit there...)
- Doug
Tuesday, December 16, 2008
MUCH better. Homebound Friday?
I am happy to report that Shawndra is much better this week. My apologies for the delay in posting. Honestly, I purposely waited until I had good news to report.
You know Shawndra is feeling better when she's cracking jokes and wanting to eat a greasy hamburger. :) It appears her bowels are functioning again, as evident by consistent, significant ostomy output and very little PEG output. Yeah! Her nutrition is still limited to liquids though. At home she'll be receiving TPN via her porta-cath. Sorry, baby, I don't think a hamburger is going to go down very well, but, I will blend that meat patty up to pure liquid, if you so desire!
What brought her out of the 20 hour/day sleep regimen was two units of fresh, red blood. Her hemoglobin was down to a very low 7.5 g/dl, where 12.1 to 15.1 g/dl is a woman's normal range. Tis the season for compassion and miracles, and I want to thank everyone, so very much, for taking time to pray for Shawndra, and our family. God is listening...
On Thursday, while still in the hospital, Shawndra will be infused with a different chemotherapy called ERBITUX. Her decision to continue chemotherapy was difficult, because at this point, there's a careful "quality of life" balance. If all goes well, we should be home on Friday.
Ella met Santa Claus Sunday! My sister, Kristine, is a Sunday school teacher at Prince Of Peach Catholic Church. After mass, Krissy's class, which Ella attends, and five other classes, sang songs. Afterwards, Santa strolled in and surprised them. (I'll post a photo the next time I see Krissy.) On seeing Santa, Ella's jaw dropped. Then she looked at me, pointed to Santa, and mouthed "Santa Claus"! It was a joyful moment to see how excited she was.
- Doug
You know Shawndra is feeling better when she's cracking jokes and wanting to eat a greasy hamburger. :) It appears her bowels are functioning again, as evident by consistent, significant ostomy output and very little PEG output. Yeah! Her nutrition is still limited to liquids though. At home she'll be receiving TPN via her porta-cath. Sorry, baby, I don't think a hamburger is going to go down very well, but, I will blend that meat patty up to pure liquid, if you so desire!
What brought her out of the 20 hour/day sleep regimen was two units of fresh, red blood. Her hemoglobin was down to a very low 7.5 g/dl, where 12.1 to 15.1 g/dl is a woman's normal range. Tis the season for compassion and miracles, and I want to thank everyone, so very much, for taking time to pray for Shawndra, and our family. God is listening...
On Thursday, while still in the hospital, Shawndra will be infused with a different chemotherapy called ERBITUX. Her decision to continue chemotherapy was difficult, because at this point, there's a careful "quality of life" balance. If all goes well, we should be home on Friday.
Ella met Santa Claus Sunday! My sister, Kristine, is a Sunday school teacher at Prince Of Peach Catholic Church. After mass, Krissy's class, which Ella attends, and five other classes, sang songs. Afterwards, Santa strolled in and surprised them. (I'll post a photo the next time I see Krissy.) On seeing Santa, Ella's jaw dropped. Then she looked at me, pointed to Santa, and mouthed "Santa Claus"! It was a joyful moment to see how excited she was.
- Doug
Thursday, December 11, 2008
Another Surgery = More Pain
Shawndra is experiencing a lot of pain from this surgery. The doc mentioned that he had to "move things around" to access her stomach. There were many adhesions to contend with as well. Luckily, Dr. Morgan arrived early this morning to change the pain delivery to a continuous drip. An infectious disease doctor visited this evening to address her fever. It spiked to 103 just about an hour ago... arghhh, just another hurdle, but seriously... how much can one person tolerate? True to her spirit, she is a fighter.
For those of you that continue to feed our family, thank you! It's nice to have food readily available. I think I've dropped five pounds this week, mostly due to erratic eating schedules (not depression).
It's highly unlikely we'll be home this weekend, but perhaps early next week. Gary and I had not planned on bringing Ella up to see mommy tonight, but as soon as I pulled into the parking lot, she recognized the building and said "daddy, I want to see mommy". She told me she would be real quiet, as not to wake mommy. She said she wanted to sing mommy two songs: ABCD and Twinkle, Twinkle Little Star. Mommy awakened with a big smile and sang to Ella the ABCD song. Then Ella sang to mommy the other. I hadn't cried all day (first in a week), but that, my friends, was just too much. What a little angel.
- Doug
For those of you that continue to feed our family, thank you! It's nice to have food readily available. I think I've dropped five pounds this week, mostly due to erratic eating schedules (not depression).
It's highly unlikely we'll be home this weekend, but perhaps early next week. Gary and I had not planned on bringing Ella up to see mommy tonight, but as soon as I pulled into the parking lot, she recognized the building and said "daddy, I want to see mommy". She told me she would be real quiet, as not to wake mommy. She said she wanted to sing mommy two songs: ABCD and Twinkle, Twinkle Little Star. Mommy awakened with a big smile and sang to Ella the ABCD song. Then Ella sang to mommy the other. I hadn't cried all day (first in a week), but that, my friends, was just too much. What a little angel.
- Doug
Wednesday, December 10, 2008
Bile Be Gone
Shawndra is in the recovery room. Gary, her father, and I just spoke with the surgeon that performed the PEG placement procedure, and everything went as planned. Our family is very grateful that the surgery team at St. Joseph's Hospital was able to fit Shawndra into an already very busy schedule today. The surgeon started work this morning around 6:15AM, and it's 11:45PM now.
It's been a long day. I'm in the hospital room, waiting for her to arrive. The surgeon suggested she try to walk tomorrow. Perhaps in a few days, arrangements for Shawndra's care at home will be organized (home-health/hospice to hook up her TPN, instruct us on how to operate the pumps, if something should arise, etc.) and she can come home.
Last night's slumber party was fun, up until about midnight, when I was awaken by Ella's snore. For a few minutes, I just watched her breathe, so peacefully. Daddy ended up in the guest room, and Ella had the big queen bed all to herself. There's something fundamentally wrong with that sleeping situation, I know! But, I did not want to risk waking her up while carrying her into her bedroom. A few hours later, my mind finally let me sleep.
These days, I fall asleep praying. My intentions are the same tonight.
Love you baby. I can't wait for all of us to be home again.
- Doug
It's been a long day. I'm in the hospital room, waiting for her to arrive. The surgeon suggested she try to walk tomorrow. Perhaps in a few days, arrangements for Shawndra's care at home will be organized (home-health/hospice to hook up her TPN, instruct us on how to operate the pumps, if something should arise, etc.) and she can come home.
Last night's slumber party was fun, up until about midnight, when I was awaken by Ella's snore. For a few minutes, I just watched her breathe, so peacefully. Daddy ended up in the guest room, and Ella had the big queen bed all to herself. There's something fundamentally wrong with that sleeping situation, I know! But, I did not want to risk waking her up while carrying her into her bedroom. A few hours later, my mind finally let me sleep.
These days, I fall asleep praying. My intentions are the same tonight.
Love you baby. I can't wait for all of us to be home again.
- Doug
Tuesday, December 9, 2008
No hole for the PEG... yet
Thank you, everyone, for your BLOG comments, phone calls, and support. It is greatly appreciated. For the past four days, Shawndra has been sleeping a lot, so she hasn't read your BLOG replies. But, she will soon.
This morning a gastroenterologist was unable to place a PEG. He said that he could not see the light from the scope to make the hole. This could be for a variety of reasons, one of which is the intestine has moved in front of the stomach. A general surgeon has been consulted to perform the task instead. We should see him this evening. And since our darling, mischevious Shawndra decided to let the NG tube "fall out" yesterday (hey, who was on duty while I was gone!?... just kidding), she will continue to throw up bile until the PEG can be placed. I'm trying hard to convince her to put the tube down one more time, but she'll have none of that! Once the PEG is in, that will be her "drain" since her bowels are not letting anything through due to tumor pressure. For nutrition, a nightly bag of TPN is infused via her portacath. That's the technical side of the story...
As I write this, Shawndra is in good spirits. She's semi-awake, while Pam is washing her hair with the "shampoo cap". Also she's listening to an Enya CD. That alone will relax just about anybody. The goal is to get Shawndra home so we can finish up the Christmas decorations and enjoy the holidays. The oncologist suggested Shawndra try a different chemotherapy named Urbatux, perhaps in a few weeks. Whether she chooses to continue chemotherapy is yet to be determined.
Tonight Ella and I will have a slumber party at home together. I'm near the point of exhaustion, so the family has arranged for Dustin to stay overnight with Shawndra. I need a good 8-9 hours of sleep, then the next 3-4 days of 4-6 hours won't be a problem.
There is a time and place for serious conversations with Shawndra. In a few weeks or months, or who knows when, those conversations may take place, but for now, while she is in the hospital, fighting to come home, please, be positive, and choose your words carefully. This also goes for BLOG replies. We pray she will be able to come home soon.
I refuse to end this post without some kind of laughter. Sweetie (Shawndra), I know when you ready this, you'll laugh too. And laughter IS the best medicine...
Shawndra's parents, Carolyn and Gary, have been caring for Ella during our hospital stay. A few nights ago, between the hours of 3 & 4 in the morning, she played a manipulation game with Grandma & Papa, not wanting to go back to bed, due to monsters in the closet. Last night, Grandma resorted to putting a plastic doorknob on Ella's room so she couldn't open the door. After much screaming, Ella tired, and fell asleep. Well, this morning, Grandma stepped into the backyard to leave the dogs (yes, Lexi is on a little vacation too) out. She stepped ALL the way out, and shut the sliding glass door. Can you see where this is going? Ella proceeded to lock the sliding glass door and run off the other direction. Grandma pleaded for Ella's return, but that had zero effect! Grandma had to use the garage door keypad to let herself back in. Needless to say, Ella was in big trouble. Although Ella didn't explain her actions to Grandma, I have a feeling she was just returning the "lock out" favor she experienced the night before.... :) I love that little tinker! Daddy & Ella will have NO problems tonight at home because.... she's sleeping in the same bed as Daddy! Yeah! Sorry Grandma & Papa, but I miss her so much. She's already requested to watch Scooby Doo cartoons. Hmmm, that explains the fear of monsters. Those "meddling kids"!
- Doug
------------------------------------------------------------
I wanted to clarify what hospice means and why it was suggested. First of all, the surgeon suggested that the family start thinking ahead and maybe get the paperwork and ball rolling now, to ease the stress/hassle/work later. Hospice is seen by so many as the last few weeks/days/hours. But hospice can be the support needed for the family and care in the home for the patients in keeping pain managed and keeping them comfortable for quite some time. No decision has been made yet and no one has started any paperwork that I'm aware of. I pulled off some info from the internet to maybe clarify hospice even more.
*Hospice care is provided by a team-oriented group of specially trained professionals (including as physicians, nurses, social workers, clergy), as well as volunteers and family members.
*Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
*Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
I hope that you all understand that we have NOT given up hope nor fight. Shawndra told me that she had not given up and I feel like I need to pass that along. We are all still in encouragement and positive mode. Please continue to pray for strength, for love, and for faith and hope. Each of us has different things that we are struggling with and each of us have our strengths. This has been such an amazing dynamic to watch my family hunker down, hold fast, lean on one another and others, and feel the amazing amount of love,faith, and support that has surrounded us. God has definitely been hard at work.
We are planning on having a nice Christmas with Shawndra at home!! Pray that Shawndra will be able to get out of the hospital by the end of the week.
- Andrea
This morning a gastroenterologist was unable to place a PEG. He said that he could not see the light from the scope to make the hole. This could be for a variety of reasons, one of which is the intestine has moved in front of the stomach. A general surgeon has been consulted to perform the task instead. We should see him this evening. And since our darling, mischevious Shawndra decided to let the NG tube "fall out" yesterday (hey, who was on duty while I was gone!?... just kidding), she will continue to throw up bile until the PEG can be placed. I'm trying hard to convince her to put the tube down one more time, but she'll have none of that! Once the PEG is in, that will be her "drain" since her bowels are not letting anything through due to tumor pressure. For nutrition, a nightly bag of TPN is infused via her portacath. That's the technical side of the story...
As I write this, Shawndra is in good spirits. She's semi-awake, while Pam is washing her hair with the "shampoo cap". Also she's listening to an Enya CD. That alone will relax just about anybody. The goal is to get Shawndra home so we can finish up the Christmas decorations and enjoy the holidays. The oncologist suggested Shawndra try a different chemotherapy named Urbatux, perhaps in a few weeks. Whether she chooses to continue chemotherapy is yet to be determined.
Tonight Ella and I will have a slumber party at home together. I'm near the point of exhaustion, so the family has arranged for Dustin to stay overnight with Shawndra. I need a good 8-9 hours of sleep, then the next 3-4 days of 4-6 hours won't be a problem.
There is a time and place for serious conversations with Shawndra. In a few weeks or months, or who knows when, those conversations may take place, but for now, while she is in the hospital, fighting to come home, please, be positive, and choose your words carefully. This also goes for BLOG replies. We pray she will be able to come home soon.
I refuse to end this post without some kind of laughter. Sweetie (Shawndra), I know when you ready this, you'll laugh too. And laughter IS the best medicine...
Shawndra's parents, Carolyn and Gary, have been caring for Ella during our hospital stay. A few nights ago, between the hours of 3 & 4 in the morning, she played a manipulation game with Grandma & Papa, not wanting to go back to bed, due to monsters in the closet. Last night, Grandma resorted to putting a plastic doorknob on Ella's room so she couldn't open the door. After much screaming, Ella tired, and fell asleep. Well, this morning, Grandma stepped into the backyard to leave the dogs (yes, Lexi is on a little vacation too) out. She stepped ALL the way out, and shut the sliding glass door. Can you see where this is going? Ella proceeded to lock the sliding glass door and run off the other direction. Grandma pleaded for Ella's return, but that had zero effect! Grandma had to use the garage door keypad to let herself back in. Needless to say, Ella was in big trouble. Although Ella didn't explain her actions to Grandma, I have a feeling she was just returning the "lock out" favor she experienced the night before.... :) I love that little tinker! Daddy & Ella will have NO problems tonight at home because.... she's sleeping in the same bed as Daddy! Yeah! Sorry Grandma & Papa, but I miss her so much. She's already requested to watch Scooby Doo cartoons. Hmmm, that explains the fear of monsters. Those "meddling kids"!
- Doug
------------------------------------------------------------
I wanted to clarify what hospice means and why it was suggested. First of all, the surgeon suggested that the family start thinking ahead and maybe get the paperwork and ball rolling now, to ease the stress/hassle/work later. Hospice is seen by so many as the last few weeks/days/hours. But hospice can be the support needed for the family and care in the home for the patients in keeping pain managed and keeping them comfortable for quite some time. No decision has been made yet and no one has started any paperwork that I'm aware of. I pulled off some info from the internet to maybe clarify hospice even more.
*Hospice care is provided by a team-oriented group of specially trained professionals (including as physicians, nurses, social workers, clergy), as well as volunteers and family members.
*Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort.
*Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends.
I hope that you all understand that we have NOT given up hope nor fight. Shawndra told me that she had not given up and I feel like I need to pass that along. We are all still in encouragement and positive mode. Please continue to pray for strength, for love, and for faith and hope. Each of us has different things that we are struggling with and each of us have our strengths. This has been such an amazing dynamic to watch my family hunker down, hold fast, lean on one another and others, and feel the amazing amount of love,faith, and support that has surrounded us. God has definitely been hard at work.
We are planning on having a nice Christmas with Shawndra at home!! Pray that Shawndra will be able to get out of the hospital by the end of the week.
- Andrea
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