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I’m so sorry to hear about Colin’s fever. My prayers are with you, Colin and your daughter. I thank you for saying a prayer for my dad also.
Tell Charlie I’ve been a die hard Cowboys fan since I was a little boy also. Although “little boy” for me meant the Danny White years, not Dandy Don. From Danny White to Gary Hogeboom (of “Survivor” fame) to Steve Pelleur (with a brief appearance by the immortal Babe Laufenberg) to Troy Aikman to Quincy Carter to Chad Hutchinson/Drew Henson (our “pitcher/QB” experiments) to Vinny Testaverde to Drew Bledsoe (football’s version of Wally Pipp) to Tony Romo…
Please wish Charlie a great turkey and pigskin day for me and say to him – “How ’bout them Cowboys!”
What paper was it? Is there anything online?
So glad to hear Charlie is doing well. I’m very happy that you guys can spend a nice Thanksgiving together. The holiday is very timely ain’t it. Hopefully Sarah and Ben can enjoy it and not be sad.
We’re going to have a tough week. Actually the last week has been pretty hard. It’s so difficult because the preceding 2 weeks dad started to feel much better. He suddenly had more energy, distension and swelling in feet pretty much went away, and even his labs showed bili coming down from 4.8 to 3.8 to 3.2 and then to 2.9.
With the improving liver function, onc gave clearance to start new round of chemo (gemzar) but dad literally started to get worse within 36 hours. First he noticed urine was darker and then mom noticed feet and belly swelling. Labs confirmed all this with big drop in cbc’s and nutrition (which both had been going up) and increase in bili from 2.9 to 4.6. To add insult to injury he started hiccuping that same night as the first gemzar/deca and it’s been pretty unbearable for him. This wasn’t a problem in previous treatment rounds.
An interesting thing happened this past week. It was actually my birthday and we spent it together as a family. Dad put on a good face and was a real trooper. However, that night he slept very poorly due to the hiccups. So at 3 am he just lay there and mom woke up as well. They started talking and out of the blue dad asked what’s the point of living life like this. On the one hand it’s really sad to hear something like that, but on the other hand it was actually good to hear him express some sort of emotion because up to this point he pretty much hasn’t said anything. Although the message itself is not the most positive, it at least gives mom an opportunity to have a dialogue with dad about what he really wants to do.
Anyway, this coming week is going to be a bear. Ultrasound on Monday. Possible parasentesis and platelet transfusion on Tuesday. And only if ascites go down then ERCP on Wednesday. The hiccuping will definitely make the procedure more difficult. Thursday will likely be hospital cafeteria turkey for us and clear broth and jello for dad. It sure isn’t carving by the tableside along with all the fixings, but at least we’ll be together.
We can definitely use the prayers this coming week. Thanks for keeping us in yours.
Thanks Jeff. How was it “determined” to be the decadron that caused the hiccups? Was it your own process of elimination or an actual test?
Also, I’m presuming that it varies by person, but how long did you have the hiccups for after each treatment? And as far as the hot bath, how long was it effective for?
I am so happy for you and your family. Makes me feel good about the power of prayer. That is the best news and gives me hope for my dad. He had a really good week last week and his labs had improved to the point where the onc felt okay starting chemo again (first round of gemzar). Unfortunately, today was not a good day as he seemingly went from asymptomatic to problematic over a 24-hour period. I don’t know if starting chemo again was a good idea.
Hope Charlie is having a good time watching MNF!
This is a good time to remember the message of your avatar. I think you said very well when you wrote: “One silver lining is that when your heart is on your sleeve like this you also can’t help but really feel the love around you.” You’re in my prayers.
My heart goes out to you and your family right now. When my father was first diagnosed, it was at a local medical center and the impression I had was that they did not have any pro-active plan to treat my dad but rather were just going to deal with symptoms as they came. The problem was magnified by the fact that he was on a HMO. That was probably the most difficult week – the feeling that doctors and hospitals would just literally make you wait what seems to be an eternity while the one you love is getting worse before your eyes. So, I started contacting individual doctors directly by email and giving them the dire urgency of the situation and the roadblocks we were facing. To my surprise, I got responses literally that day or the next, with some responses coming as late as 11 PM or as early as 5AM. Next thing I knew, I had consults scheduled to bring my dads records/scans/etc. to both Cedars and UCI medical center. Later, I had the same type of expedited action at UCLA.
What I realized was that hospitals are as bureaucratic as you can get. As such, going through the typical routes gets you nowhere. Instead, by going directly to the doctor/specialist it is much more likely to get attention right away. I’m not sure if that’s what you did with UCSF but I’d recommend going to their website, looking for the individual doctors (contact multiple) in the specialty and then emailing AND calling their offices. For me, emailing was generally more effective since there is no screener and goes directly to the doctor. What then happened is that the doctor would respond to me ASAP and refer me to his/her administrative coordinators. However, once I had that email response in hand from the doctor, it proved to be a lot more effective than going directly to the office/coordinators.
Lana, my “advice” really isn’t much but I just wanted to let you know that I’ve had some positive experiences even when it seemed like the hospital was putting us on a “wait list”. Unfortunately, it sometimes requires being a bit of a pest and working around the usual way of doing things.
Good luck and I hope #21 on the wait list becomes #1 very soon.
BTW, there was some news on Dr. Canady this past weekend. Apparently, he was suspended by the hospital but he obtained an emergency court order that allowed him to perform procedures for the time being. There are no details on the cause/reason for the suspension by the hospital.
I hope that things have been going well at Chapel Hill. My prayers are with you and Charlie. I’ve also been praying for strength for Sarah and Ben.
he was indeed suspended, but via temporary injunction he is allowed to resume surgery for the time being.
i found this article tonight:
it doesn’t really go into specifics about the cause of the suspension. what is interesting though is the notion of a hospital trying to preclude it’s own doctor from performing procedures.
i’m sure there will be additional news reports in the coming week.
Looks promising but reads like it is way early in the study cycle. Am I misunderstanding this? Does anyone else have any insights or has talked to their doctor about this?
I empathize with your situation. As a professional in the medical field, you must be the one that your family is looking to in order to provide the right answer on how to treat your dad. I know how hard that can be since there are so many times when I question whether my choices for my dad are the right ones. One day I want to try aggressive actions to attempt to “cure” dad. Other days I just want to focus on palliative quality of life. Dad pretty much says he wants to do whatever I think is best for him. And that’s why something like the Dr. Canady story is so difficult even though it sounds good.
I hope that your brother’s adamancy on getting the second opinion from UCSF does not cause any friction within the family. My experience with a large, established UC hospital is that they will likely take a more scientifically proven approach to medicine and not take actions that they deem to be excessively risky. And even if they do say it is ok to go ahead with the surgery, you will still need to decide whether to do it at UCSF or go to PA. I guess what I’m trying to say is that there really is no right or wrong decision. Your dad knows that all of you love him very much and simply want the best for him.
Lana, ny thoughts are with you and your family. If you don’t mind, could you let me know what UCSF thinks about Dr. Canady’s surgery. Thanks.
Thank you to everyone for your messages. I wanted you to know that all of you have been specifically mentioned in my prayers at night, and especially Carol and Charlie for God’s helping hand this week.
I wish you and your family the best of luck with Dr. Canady. Like many others who viewed the Russels video, my first reaction was hope but then it was followed by some fearful apprehension. My father also has intrahepatic and an attempted resection was done in Feb06, whereby the doctors said it couldn’t be removed. The first 12 months were pretty good, but things have deteriorated since June of this year.
Was your father’s situation the same as far as doctors saying they couldn’t cure it? It really sounds like Dr. Canady is a miracle worker and the thought of that is both optimistic and very scary to me. It seems that he says he can do what no other doctors are able to. I’m so confused.
Thank you for your reply. I know that you are stronger than you know. I’m in my 30s and am at least able to help my mom out with finances and being the caretaker for all medical affairs. Sarah and Ben are at an age where they are too old to not be affected but not old enough to do much to help with respect to the mundane adult concerns. Charlie is fortunate to have you. Something that gives me a little solace is that when my grandmother passed last year, my mother was more at peace with it because she did everything she could while grandma was alive. The worst feeling is when the one you love is gone and you say to yourself why couldn’t I have been there or done that for him/her. I know that my aunt feels that way.
I am putting together a list for my prayers and will definitely have you, Charlie, Sarah, and Ben in my prayers. Thank you for having Bill, Amy, Charlie, Linda, and Richard in yours.
Carol, my thoughts are with you and your family for next week – Richard