Update on Dave’s fight….
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Beth,
I’m so sorry for all the problems Dave is going through now. This cancer is particularly evil as far as all of the complications it causes. It really is unbelievable how things can be going along smoothly and something like this will come and knock you right off your feet. We have been doing this for 4 1/2 years and it seems like there is always something to deal with. I hate to sound down to all of the new members here but it’s just the nature of this beast. We all understand exactly what you are going through and hope and pray things improve dramatically for Dave. Take care of yourself too! At times like this it is hard to even think about your own needs, but you need to sleep and eat decent meals too! Every time Tom gets sick and ends up in the hospital we both lose weight! It’s a lousy diet plan but I know it’s really hard to eat and sleep when you are so worried and stressed. Keep us posted and know we are all thinking of all of you and hoping for continued good news. MaryBeth,
Thank you for letting us know how Dave is doing. I so hope that Dave starts to feel better very soon and that you get him back home with you as soon as possible. Thinking of you both as you go through this.
A big hug for you,
Gavin
Ladybug and Highsmith- I cannot write enough how lucky and blessed you are to be at Barnes. i have been all over that hospital for 2 years. I was on the 6 floor last time for 3 months. I had 6 drains, a feeding tube and a massive open wound which a vacuum pump wouldn’t work with. My wound was changed every 12 hours. I am sure if you mention my name (Cathy Dunnagan or Mrs. D) to Kim (physician asstitant) or Tracy, Kelley or any of the nurses they will know me. I went back for a visit last month and shared so many tears and hugs. I spent a month on 8th floor ICU, receptionist in waiting room remebers my family. Tanisha was my ICU nurse for both transplants, she is one of the main reasons I am still here. She later told me how nobody would make eye contact or look at the clock, because they all knew they should call it!! I even have a picture up on there board. I woke up from a 3 week coma with a manicure and a pedicure!! Tanisha and gang were unbeliavable.
I just want you to know what unbeleivable care you are in. I could go on and on with all my stays at Barnes (probably 15-20, was just there for most of May and June) and couldn’t give one negative comment. I would love to help you both, so if you need company, a break, a shoulder to cry on or just food call (618-254-1642), we are 20 minutes away. My doctors and I both believe God saved me to tell my story and give this cancer a face and hope. Tell Dr. Crippin hi!! Lots of prayers for both. CathyBeth,
Thanks for keeping us informed, even tho’ it is not the news we wanted to hear. Hopefully things will get sorted out and Dave will be home again soon.
My thoughts are with you.Love & Hugs,
DarlaGood Morning Beth. I know everything seem like it is the highest mountain to climb right now, but each day forward will be a little better, When T had his Whipple he was in much the same shape. Hopeing the nausea has settled now. As for the hiccups we recently had a dicussion on here. Tom found out that 2 TLB of suggar worked perfectly. I believe you have to swallow it fast. T had hiccups for 5 months until we heard about Brioshe. It works! In a blue bottle at Walgreens. T also had the shots in the tummy for higher sugar at the time. Slowly, everything will go back to normal. Once some of the drains are out he will feel better. What he needs now is to just rest. I do remember they had him shaved every morning before I would get there. That was his goal and they knew it was important to him. His best RX will be to see Maycie, I am sure. Hang tough, we are thinking of you and sending the best thoughts your way!
Beth……These surgeries are tough on the body and the mind and we have to expect some tough days to be ahead. But, Dave is a fighter and I have confidence that he will continue to improve a bit more each day. That is what I wish for.
Tons of love and hugs,
MarionLadybug – I am so glad you posted what is going on and how hard it is. It is so hard to see them in pain and the bittersweet pain of the precious memories. We appreicate your struggle and wish for you that it could be different. Please know that we are thinking of you and your family. I pray that you all get a good night’s sleep as you know the battle awaits again tomorrow. We are on the battlefield with you. Take whatever comfort you can in knowing people care. Blessings, Susan
Ladybug-I am so sorry Dave is struggling. I hope things turn around! I am new to the board, but my dad is being treated at Barnes and we were in the ER for 12 hours today and my dad was admitted. We seem to have different doctors (Linehan and Crippin for GI and transplant) and Tan for Oncology but it is a small world! We spent 44 days there in March, April and May and had fabulous care in CICU on the 8th floor and then the 6th floor(all over, five different rooms and counting. We, too, have had two different wound vacs and J and G tubes and all the home care and agony that goes with it and now eight admissions since then.
I spend many,many days in the halls. Please feel free to email me if you want to have coffee or lunch!
Here is an update from my journal:
Good Evening all…
I am struggling tonight…so…I here goes.
The battle rages on, and it seems as though things are feeling very familiar. Sometimes I wonder…how it can be that we are here again. Another surgery…another ICU, and another incision. Another separation…
Today, when Bethany and I went to see him, he told me that he had not slept that much last night, and he looked VERY tired. I know he is. He did tell me that he sat in a chair today, they want him to be up as much as possible. I noticed that he looked as though he had shaved. I asked him, and he told me that he shaved himself! Surprised me! I think that may have been what wore him out!
He continues to be in ICU, and he has 3 drain tubes coming out of his side. One is the drain from surgery, one is the biliary drain, and the feeding tube. He will come home with the feeding tube, and I actually had a bit of training today from the ICU nurse as to how to work the feeding tube. I am certain that I will get official training from the Home Health Nurse when he comes home. They are also checking his sugar levels, they have been a bit high, and he has gotten a couple of insulin shots.
He is still only allowed to have ice chips, and sips of water, but nothing more at this point. He has a pain pump that he uses quite often. I got to see his incision, and it is massive, in the same place as the last one, BUT…it looks GREAT…no redness, or swelling! He thighs are pretty huge, and they have something on his calves to massage them to prevent any blood clots from forming.
Today as we were there, the nausea came back, and he just seemed to be struggling with trying to fight it. The Docs ordered him to have a nausea med, so he was getting a shot for that. Oh..and guess what is back…those nasty hiccups! Funny, one of the nurses in ICU said that one thing that she knows works is for him to suck on a spoon for two minutes. Apparently it puts some pressure on the diaphragm, and stops them. While were there, he tried it and it seemed to work. His heart rate concerns me, as it seems to be running at about 120-122.
Doc Hawk was off this weekend so today when I found out about the nausea, I emailed him the latest update to which he replied “Thank you”, so I know he knows about it, and is informed.
Bethany was there with me today, and Tina had been in St. Louis since the surgery, and had planned to leave today with Phil. She has been my eyes and ears when I am not there, and I love her dearly for that.
As Bethany and I visited with him today, showing him a photo album of wedding pictures that Tina had put together, it was hard for me …battling back the tears. Just looking at him…and knowing how hard this must be for him…breaks my heart. Little things that I never thought about…make me just catch my breath. Like tootsie rolls, something as silly as that. Dave loves them, and as Maycie was going through her Halloween candy, she realized she had a ton of them, and said “Daddy will be happy, look at all these Tootsie rolls he will get!!”
As we were sitting in the surgery, and after the surgery, when Doc Hawk came to talk with us (being me and Dave’s family), he mentioned that there was a spot on Dave’s bowel, that looked suspicious. Something that concerned him that it might be a recurrence. He did a biopsy on it, and sent it off to see if the cancer has returned. I am not for sure when I will get the results. I was told in a few days. Dave is not aware of this information. He does not know that there was a biopsy done. I sent Doc Hawk an email, asking him nor any of his staff to please not tell Dave about this. It will only make him worry and not sleep. He does not need that at this time. I am asking that any one that knows about that to please keep that news quiet until we know something for sure, and Dave is in better condition to handle news like that.
I came home tonight to get Maycie, as she was being cared for by Debbie, her wonderful caregiver. Maycie made a card for her Daddy, and is snuggling that bear every night. Tonight as I tucked her in, and we did prayers, she told me…”I miss Daddy’s voice.” She has not seen him since Monday, and has not talked to him since Thursday morning before school. He has not been able to talk on the phone too much just yet, and I am hoping that he is able to talk and text again once they get him moved to a regular room. I really miss those bedtime talks.
I am not certain when he will come home, I am sure it will be at least another week or more. I plan to take Maycie up there this week to see him once he is out of ICU. I know how hard it is for her. The closeness that they share is something that she will cherish forever.
Our friends…Tara and Beth, and Anne, and many others are busy working on the benefit for Dave. I am certain that he won’t be able to be there, and that just breaks my heart. So many people coming together to show how much they love him..something that will touch him so much.
I called the ICU tonight, and he is still there. He is battling the hiccups pretty bad. Praying he gets a good night sleep.
I am very tired, and I am going to call a friend to pray, and then try to sleep.
I love you all so much…keep praying for us.
HUGS!
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