Mark thought many would like to hear Dr. Cooley's perspective in his own words.
Monday, September 21, 2009
Sunday, September 20, 2009
Dr. Cooley visit.
I know so many of you have been waiting patiently for this post. I think I have finally recovered from the whirlwind of activity and emotion. We had a really awesome trip. I am still in awe of how this whole thing worked out. It just fell into place like it was meant to be. We arrived at the hospital two hours early (Yes, I know, very unlike us!). I had planned for the worst possible traffic and conditions, but everything went beautifully. We just decided to walk around and the first turn we took led us right to the museum at the Denton A Cooley Building at the Texas Heart Institute. It was so amazing. I know I have said this to a few people, but we really take for granted heart surgeries and artificial valves and heart transplants etc., like they are something we just expect to happen. We were so fortunate to be seeing the man who pioneered many of these things. For instance, a book in a case was titled "Surgical Treatment of Aortic Aneurysms" by Denton A. Cooley. The man we were going to see wrote the book! Too awesome!
As for the appointment, it was much like any other with one exception. When he came through the door, every staff member in the office stood and did not sit until he had gone! It was quite impressive. He was shocked to see Mark sitting in the room. (No, he didn't recognize him) His first words were, "Well you look like you are in great shape." In a nutshell, that was the basis for recommending that we not do anything. Mark is doing so well and has no symptoms of pain, high blood pressure, valve failure or anything else. He said that when weighing the risk of the surgery, the risk was to great to take considering how well he is doing. He feels that the aorta might have been enlarged for some time as this can occur in people with the congenital defect that Mark had. Apparently whatever causes the aortic valve to be defective also alters the makeup of the aorta making it more prone to aneurysm. He said that we couldn't solely rely on the size of the aneurysm in Mark's case because of the other factor's that make the surgery a greater risk. As far as long term, the key will be to keep Mark's blood pressure low and refrain from strenuous activity. He did give him a little breathing room allowing him to do some things, but not to overdo anything.
We are so happy that he does not have to endure the stress of that surgery. I will say that this decision is another huge leap of faith for me. While I am glad that he is not going to undergo surgery and the risk it entails, the reality is that the risk of the aneurysm is still the same. I know that God is looking for our total trust. I just pray for His help each day to overcome my human fears. I know that He will provide all that we need, each day, all the time.
Where we are now, your guess is as good as ours. We thing that we will wait for a follow up scan prior to doing Mark's final bowel surgery. That should be either the end of October or November. That will be into Royal Theater play time, so it may be after the first of the year that the next surgery occurs. That is a tentative plan, but there are no definites at this point.
I do know that the Brown's will be laying low. We are going to be out of the spotlight for a while. We are going to get back to just work and kids and recovery for a while. It has been a long 11 months and we are a little weary and looking forward to some kind of normalcy. This could mean a little hiatus from the blog for a while. I will update with any news or changes in the plan, but otherwise, it will be very limited. I thank all of you so much for all of your support. You are so dear to us and we certainly have felt your presence each step of the way. We appreciate your continued prayers as we sort through these final stages.
Love to all, Missy
As for the appointment, it was much like any other with one exception. When he came through the door, every staff member in the office stood and did not sit until he had gone! It was quite impressive. He was shocked to see Mark sitting in the room. (No, he didn't recognize him) His first words were, "Well you look like you are in great shape." In a nutshell, that was the basis for recommending that we not do anything. Mark is doing so well and has no symptoms of pain, high blood pressure, valve failure or anything else. He said that when weighing the risk of the surgery, the risk was to great to take considering how well he is doing. He feels that the aorta might have been enlarged for some time as this can occur in people with the congenital defect that Mark had. Apparently whatever causes the aortic valve to be defective also alters the makeup of the aorta making it more prone to aneurysm. He said that we couldn't solely rely on the size of the aneurysm in Mark's case because of the other factor's that make the surgery a greater risk. As far as long term, the key will be to keep Mark's blood pressure low and refrain from strenuous activity. He did give him a little breathing room allowing him to do some things, but not to overdo anything.
We are so happy that he does not have to endure the stress of that surgery. I will say that this decision is another huge leap of faith for me. While I am glad that he is not going to undergo surgery and the risk it entails, the reality is that the risk of the aneurysm is still the same. I know that God is looking for our total trust. I just pray for His help each day to overcome my human fears. I know that He will provide all that we need, each day, all the time.
Where we are now, your guess is as good as ours. We thing that we will wait for a follow up scan prior to doing Mark's final bowel surgery. That should be either the end of October or November. That will be into Royal Theater play time, so it may be after the first of the year that the next surgery occurs. That is a tentative plan, but there are no definites at this point.
I do know that the Brown's will be laying low. We are going to be out of the spotlight for a while. We are going to get back to just work and kids and recovery for a while. It has been a long 11 months and we are a little weary and looking forward to some kind of normalcy. This could mean a little hiatus from the blog for a while. I will update with any news or changes in the plan, but otherwise, it will be very limited. I thank all of you so much for all of your support. You are so dear to us and we certainly have felt your presence each step of the way. We appreciate your continued prayers as we sort through these final stages.
Love to all, Missy
Wednesday, September 16, 2009
Late Wednesday
Monday came and went without a call. But early Tuesday morning, Dr. Cooley's nurse called to say they would like to see Mark on Thursday! Yes, this Thursday. Things fell into place pretty well to make it happen. In March we had to cancel a trip to Houston for a friends wedding. We figured we probably ate the cost as the reschedule fee was fairly hefty. It turns out that the fee was waived due to the medical necessity of the cancellation. This made flying an affordable option, so we can make a one day trip.
We are staying the night with Judy and Donny and will leave at 0630 in the morning for Houston. Mark's appointment is at 1100. at St Luke's Medical Center/ Texas Heart Institute. We are really looking forward to hearing input. We have enjoyed looking at all of the old pictures and documents from Mark's previous surgeries in Houston. It is amazing how things have changed with time!
We will report on our visit, but our flight does not leave Houston until 7:30pm.
I will take many prayers for safe flights and great pilots!.
Missy
We are staying the night with Judy and Donny and will leave at 0630 in the morning for Houston. Mark's appointment is at 1100. at St Luke's Medical Center/ Texas Heart Institute. We are really looking forward to hearing input. We have enjoyed looking at all of the old pictures and documents from Mark's previous surgeries in Houston. It is amazing how things have changed with time!
We will report on our visit, but our flight does not leave Houston until 7:30pm.
I will take many prayers for safe flights and great pilots!.
Missy
Friday, September 11, 2009
Call from Houston.
Dr. Cooleys nurse Dena called yesterday evening. She said that Dr. Cooley would love to see Mark. They reviewed all of the information we originally sent in November 2008 as well as the most recent information. He would like to examine Mark himself and advise us from there. We are not certain whether it will be next week, but for sure within a couple of weeks.
I really feel like God has opened big huge double wide door has opened for us. Second opinions are always great, but even better to be coming from Dr. Cooley. We are in such good hands. We just keep finding blessings in each step we take!
Please everyone throw in an extra prayer today for our friend Melissa, the young mother with cancer. She is having a very difficult time and is back in the hospital with suspected radiation poisioning and a possible staph infection. She is very sick and I just pray God will lay His hands on her and blanket her and her family with many blessings to get them through this trying time.
Hope everyone has a great day. Happy Friday and even better, HAPPY WEEKEND!!!!!
I really feel like God has opened big huge double wide door has opened for us. Second opinions are always great, but even better to be coming from Dr. Cooley. We are in such good hands. We just keep finding blessings in each step we take!
Please everyone throw in an extra prayer today for our friend Melissa, the young mother with cancer. She is having a very difficult time and is back in the hospital with suspected radiation poisioning and a possible staph infection. She is very sick and I just pray God will lay His hands on her and blanket her and her family with many blessings to get them through this trying time.
Hope everyone has a great day. Happy Friday and even better, HAPPY WEEKEND!!!!!
Wednesday, September 9, 2009
Addendum
God is watching me today. Since the time of Mark's appointment with the heart surgeon, we have had a lot of unanswered questions. I have really tried to just "let it go", but I haven't been real easy about our plan or semi-plan. I just prayed about it that God would just lead me to know what my role should be in all of it.
Sooooo, today, I picked up the phone to call Houston. Imagine this, I got directly to Dr. Cooley's office and to his nurse, the very person who typed the letter for Dr. Cooley when we consulted him back in November of 2008! She was so wonderful. She took all of Mark's info and is going to call me back. She reminded me that Dr. Cooley is now 89 (had a birthday in August!). He sees patients in the clinic but does not operate anymore!
Truly amazing that his health has allowed him so many years of sharing his expertise.
Anyway, we don't know what will happen tomorrow, but I feel really good about today!
Love to all, Missy.
Patiently Waiting.
Riiggghhht. Okay, maybe I am waiting - not by choice. There has been no post because there has been very little to post. Just a lot of frustration. After we were informed of the delay in the heart surgery and got the go ahead to do the bowel surgery, we got stalled again. The colorectal surgeon wanted a study of all of the reconstruction that he did in January to make sure it was all working. Easy enough. We had that done today in Wichita Falls. Preliminary reports looked good with no evidence of any complications with the reconstruction. We will sent those results to him. He also wants a release from the cardiac surgeon before he will do the surgery. Communicating with these guys is no easy task. Of course they are not local, and you never actually get to speak to the doctor, then you throw in a Friday and a holiday, and things move at turtle pace!
Sooooo. We are still really in limbo and have had some uncertainties over the last week or so. We need lots of prayers for guidance for his physicians to set a plan and have confidence in it. This would help us to feel a little more settled.
Thanks for checking up on Mark.
Missy
Tuesday, September 1, 2009
Monday/Tuesday Dr. visits
We saw Dr. Crim yesterday evening. He examined Mark and was very pleased with how everything was going. He even talked about scheduling the surgery to reverse his ileostomy. He was reminded of the heart surgery however and told us to call him following recovery from heart surgery. All was good otherwise.
That being said, we can preface the appointment today by saying that the best laid plans are meant to be changed ---right? Today's appointment with Dr. Kourlis brought a new agenda. He reviewed all of the records and the procedure with us. The procedure to fix the aneurysm is huge. Consequently, the risk is great. He really wants Mark to be at "the top of his game" before he will do the surgery. He would like him to be further out from chemo and to have the follow up scan that was recommended by the radiologist following the PET. He would also like to figure in the statistics related to recurrence for Mark's type of cancer. In a nutshell, Mark's health must be optimal in order for him to believe he has the best chance of surviving the surgery.
We have questioned ourselves if the surgery is an absolute. If the risk is so great, is this really what is best. He did confirm that it needs to be done, but the conditions need to be the best they can be. He also feels like that includes reversing the ileostomy. Due to the difficulty of fluid regulation with the ileostomy, he feels it would be best if that were reversed prior to the heart surgery.
Sooooooo, it appears that surgery is likely within a couple of weeks, but not heart surgery. Dr. Crim is out of the office today, but tomorrow we will attempt to get back in touch with him to discuss scheduling the reversal operation.
We haven't eaten yet today, so that is where we are headed and will be on the road again. Hope I have answered many questions. I am sure we will be talking soon.
Much love, Missy
That being said, we can preface the appointment today by saying that the best laid plans are meant to be changed ---right? Today's appointment with Dr. Kourlis brought a new agenda. He reviewed all of the records and the procedure with us. The procedure to fix the aneurysm is huge. Consequently, the risk is great. He really wants Mark to be at "the top of his game" before he will do the surgery. He would like him to be further out from chemo and to have the follow up scan that was recommended by the radiologist following the PET. He would also like to figure in the statistics related to recurrence for Mark's type of cancer. In a nutshell, Mark's health must be optimal in order for him to believe he has the best chance of surviving the surgery.
We have questioned ourselves if the surgery is an absolute. If the risk is so great, is this really what is best. He did confirm that it needs to be done, but the conditions need to be the best they can be. He also feels like that includes reversing the ileostomy. Due to the difficulty of fluid regulation with the ileostomy, he feels it would be best if that were reversed prior to the heart surgery.
Sooooooo, it appears that surgery is likely within a couple of weeks, but not heart surgery. Dr. Crim is out of the office today, but tomorrow we will attempt to get back in touch with him to discuss scheduling the reversal operation.
We haven't eaten yet today, so that is where we are headed and will be on the road again. Hope I have answered many questions. I am sure we will be talking soon.
Much love, Missy
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