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

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)

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

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

	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

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. :)

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

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

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

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