I have been given the incredible opportunity of establishing a memorial scholarship in Paul's name. The scholarship will be given to a student of architecture at Prairie View A&M every one to two years. I am able to provide the funds necessary to establish the principle of the fund. However, if any one else would like to contribute, I would very much welcome it. Any little bit extra that goes into the principle means a larger scholarship can be drawn off the interest.
If you haven't heard of Prairie View A&M it is a historically black college located in Prairie View, TX. It's about mid-way between College Station and Houston. They have an excellent architecture department that attracts students from all over the country. The small program consistently wins awards in design competitions against much bigger programs. Paul loved going to Prairie View and always felt the attention he received and his education were superior to what he would have received elsewhere. I watched Paul grow and develop as an artist and designer while he was there. I'd like to help future architects to the same level of achievement.
If you're interested, please let me know.
Saturday, May 7, 2011
Tuesday, September 21, 2010
Funeral Arrangements
The Funeral Mass will be at 10:30 on Saturday, Oct. 2nd at St. Joseph Catholic Church
600 S. Jupiter Rd, Richardson, TX 75081
A lunch will follow for all who attend.
The Vigil will be at 4:00 on Friday, Oct. 1st at St. Joseph as well.
If you will be coming from out of town, and need a hotel room, please contact me. I am trying to organize a block of rooms.
600 S. Jupiter Rd, Richardson, TX 75081
A lunch will follow for all who attend.
The Vigil will be at 4:00 on Friday, Oct. 1st at St. Joseph as well.
If you will be coming from out of town, and need a hotel room, please contact me. I am trying to organize a block of rooms.
Thank you for all the prayers. We're all having our moments, but we know we have the love and support of our family and friends to get us through this.
Saturday, September 18, 2010
Parting
May the Angels lead you into paradise; may the martyrs greet you at your arrival and lead you into the holy city, Jerusalem.
Paul died peacefully this morning, September 18 at 12:00 noon.
Funeral arrangements will be announced soon.
Paul died peacefully this morning, September 18 at 12:00 noon.
Funeral arrangements will be announced soon.
Friday, September 17, 2010
Friends you've never met
Months ago when all this started, I came across a blog about a man with Hepatosplenic t-cell lymphoma and his family. The man's name was Ryan Hess. Ryan had a type of non-Hodgkins lymphoma very similar to what Paul has. I fact the doctors thought for awhile Paul did have Hepatosplenic lymphoma.
I was hooked on the blog immediately. Ryan's wife Margie is the primary writer of the blog with Ryan having made a few contributions as well. Team Ryan Hess is perhaps the most gripping, inspiring, faith-filled, funny and sad blog I have ever read! I was so moved by the blog I contacted Margie. We corresponded once before Margie published the heart-breaking news that Ryan was in hospice and only expected to live a couple more weeks. Wow! Margie and Ryan got busy doing and sharing all those last things you'd want to do with your loved one if you knew your time was ending. Ryan ultimately died peacefully three weeks after the announcement.
Since then Margie has continued to publish stories about her and Ryan, and life after Ryan's death with her and their adorable two kids. Despite how busy she is, she still very graciously posted something about Paul after I contacted her asking her for prayers. Please read her entry and if you have time read her blog as well. It is one of the most worthwhile uses of the Internet I have seen.
Please keep Paul in your thoughts and prayers. We are in Paul's final few days of life on earth. Heaven is awaiting him!
I was hooked on the blog immediately. Ryan's wife Margie is the primary writer of the blog with Ryan having made a few contributions as well. Team Ryan Hess is perhaps the most gripping, inspiring, faith-filled, funny and sad blog I have ever read! I was so moved by the blog I contacted Margie. We corresponded once before Margie published the heart-breaking news that Ryan was in hospice and only expected to live a couple more weeks. Wow! Margie and Ryan got busy doing and sharing all those last things you'd want to do with your loved one if you knew your time was ending. Ryan ultimately died peacefully three weeks after the announcement.
Since then Margie has continued to publish stories about her and Ryan, and life after Ryan's death with her and their adorable two kids. Despite how busy she is, she still very graciously posted something about Paul after I contacted her asking her for prayers. Please read her entry and if you have time read her blog as well. It is one of the most worthwhile uses of the Internet I have seen.
Please keep Paul in your thoughts and prayers. We are in Paul's final few days of life on earth. Heaven is awaiting him!
Sunday, August 29, 2010
Ups and Downs
We've been home a month now. Our last trip to Houston was right before I had to be back at school. It was a pretty busy visit. Paul had a test called a cistrenogram to check for his suspected cerebrospinal fluid leak. We weren't notified of any abnormal results from the test, so for several weeks we assumed nothing was wrong. Then a call came three weeks ago saying Paul did have a leak and it should be fixed as soon as possible. However, Paul was having a feeding tube placed the day the MDACC doctor wanted to fix the leak. So it was determined we could wait two weeks until Paul was better nourished.
Fast forward two weeks and things have changed significantly. I am sad to write that Paul has entered hospice care. We don't know when our time together will be through, but we ask all of you to pray and hope that we have some quality time to make more lasting memories together. If you would like to visit you are welcome to. Paul is feeling well enough to spend time out of bed a great deal of the time.
On the very bright side, Paul was Baptized, received First Communion and Confirmation two weeks ago. The new pastor at St. Joseph, Bishop Doug Deshotel came to our house to perform the rites. Paul and I are both very happy and it brings us comfort.
Please keep all of us in your thoughts and prayers as we go take Paul's final journey together.
Fast forward two weeks and things have changed significantly. I am sad to write that Paul has entered hospice care. We don't know when our time together will be through, but we ask all of you to pray and hope that we have some quality time to make more lasting memories together. If you would like to visit you are welcome to. Paul is feeling well enough to spend time out of bed a great deal of the time.
On the very bright side, Paul was Baptized, received First Communion and Confirmation two weeks ago. The new pastor at St. Joseph, Bishop Doug Deshotel came to our house to perform the rites. Paul and I are both very happy and it brings us comfort.
Please keep all of us in your thoughts and prayers as we go take Paul's final journey together.
Generosity
The first day of school is always a fun day but this latest one was very special. Almost as soon as the bell rang, two very eager, young 4th graders appeared in the library. Keep in mind the library just opened this last Friday, so I was not expecting to see any students in the library the first day of school. Well, these two students stopped in front of the desk and looked at me very excitedly. The smaller one, sporting a summer buzz cut bent down to his backpack and pulled out an orange envelope which he put in front of me. I thanked the boys and was going to open the envelope later, when the taller boy said "Open it now!". So I did. Inside was a very sweet card of encouragement from the two boys and a stack of money. What I saw were ones, so I figured it was probably about $30 or so. The two boys explained that they had a lemonade stand over the summer with the purpose of raising money for Paul and I! And then the taller blurted out, "it's $245 dollars!" I was shocked and touched, I teared up! These two boys so impressed me with their generosity and selflessness. It really reminds me what a difference each person can make in this world. Their heartfelt gesture has touched me so much and the money they raised helped as well. One unselfish act to help another person can really make a difference!
Tuesday, July 27, 2010
Balance
I haven't written in awhile. We've been having our ups and downs lately. Last week was frustrating and not particularly fruitful. Much to our and Paul's oncologists' consternation the hepatologist said it was a no-go on the drainage catheter. As the hepatology nurse practioner said "it's like a direct portal to infection" and would likely lead to a severe abdominal infection and possible death. So Paul will have repeated paracentesis performed either here or in Houston. Paul also had a paracentesis or 'tap' as they are called. The interventional radiologist pulled 4 liters of ascites fluid out of Paul's abdomen! That's after they pulled off almost 5 liters just two weeks before! So Paul's moving around, bending, and breathing much easier than before. I guess that is one fruitful product of last week.
Paul also had an EGD (in case you've never had one, it's a non-invasive procedure where a very thin camera is fed down the throat and used to visualize the esophagus, stomach and the upper intestine) last week. No new developments there though. His varices are slightly bigger but still don't pose a threat in terms of bleeding. The hepatologist decided to leave them alone for a little while longer. Again, we'll watch and wait for any signs that one has ruptured and Paul has internal bleeding. Paul also had a two day respite from his near-constant nausea. After the EGD Paul was having a really bad time despite the anti-nausea drugs he already had, so he was given a shot of Decadron. Like all steroids that drug is a miracle! Unfortunately the effects wear off pretty quickly. But those two days Paul had a much better appetite, more energy, no nausea and all-around seemed to be more himself. It was nice. Too bad long-term Decadron comes with too many downsides to use it more often.
Nausea is perhaps Paul's biggest obstacle to feeling good right now. It keeps him from eating when he wants to, keeps him from keeping down what he has managed to eat, and often interferes with his medicines. One medicine in particular - lactulose can actually trigger his nausea. It's thick, syrupy and far too sweet. We try to mask it in cranberry juice, but even that doesn't cut it. However, the lactulose is essential. It is used to treat and prevent hepatic encephalopathy due to compromised liver function; a dangerous accumulation of toxic substances in the blood, including ammonia, causing confusion, lethargy and eventually death. Paul has had some mild confusion, forgetfulness, and even difficulty writing. These are all signs of mild to moderate hepatic encephalopathy. Fortunately, encephalopathy can be treated by lactulose. It helps the body effectively rid itself of ammonia. Once the ammonia levels are lower, the signs of encephalopathy diminish. We battle this everyday - getting the right dose of lactulose that Paul can keep down while maintaining the delicate balance between not enough and too much.
Today Paul received more blood and magnesium too. Since Friday, Paul's gotten 3 infusions of magnesium. A common problem with cancer patients and liver patients is an inbalance of electrolytes, particularly magnesium. Paul has been especially hard hit with this lately. Magnesium is soooo important, and it's incredibly frustrating that Paul's levels won't stay up. The infusion is long - 2 to 3 hours depending on the dose. Paul has a hard time getting and keeping the giant horse pills of magnesium down, so this is our option for right now. Hopefully today's infusion will stick.
My greatest frustration is that we're in this kind of holding pattern where nothing really changes. It's a struggle when there's no clear end in sight. I also worry what's going to happen when I go back to school in a couple of weeks? I know my parents will help out however they can, but they have their own lives as well. Like so many things with these diseases, we have to find a way to strike the right balance.
Paul also had an EGD (in case you've never had one, it's a non-invasive procedure where a very thin camera is fed down the throat and used to visualize the esophagus, stomach and the upper intestine) last week. No new developments there though. His varices are slightly bigger but still don't pose a threat in terms of bleeding. The hepatologist decided to leave them alone for a little while longer. Again, we'll watch and wait for any signs that one has ruptured and Paul has internal bleeding. Paul also had a two day respite from his near-constant nausea. After the EGD Paul was having a really bad time despite the anti-nausea drugs he already had, so he was given a shot of Decadron. Like all steroids that drug is a miracle! Unfortunately the effects wear off pretty quickly. But those two days Paul had a much better appetite, more energy, no nausea and all-around seemed to be more himself. It was nice. Too bad long-term Decadron comes with too many downsides to use it more often.
Nausea is perhaps Paul's biggest obstacle to feeling good right now. It keeps him from eating when he wants to, keeps him from keeping down what he has managed to eat, and often interferes with his medicines. One medicine in particular - lactulose can actually trigger his nausea. It's thick, syrupy and far too sweet. We try to mask it in cranberry juice, but even that doesn't cut it. However, the lactulose is essential. It is used to treat and prevent hepatic encephalopathy due to compromised liver function; a dangerous accumulation of toxic substances in the blood, including ammonia, causing confusion, lethargy and eventually death. Paul has had some mild confusion, forgetfulness, and even difficulty writing. These are all signs of mild to moderate hepatic encephalopathy. Fortunately, encephalopathy can be treated by lactulose. It helps the body effectively rid itself of ammonia. Once the ammonia levels are lower, the signs of encephalopathy diminish. We battle this everyday - getting the right dose of lactulose that Paul can keep down while maintaining the delicate balance between not enough and too much.
Today Paul received more blood and magnesium too. Since Friday, Paul's gotten 3 infusions of magnesium. A common problem with cancer patients and liver patients is an inbalance of electrolytes, particularly magnesium. Paul has been especially hard hit with this lately. Magnesium is soooo important, and it's incredibly frustrating that Paul's levels won't stay up. The infusion is long - 2 to 3 hours depending on the dose. Paul has a hard time getting and keeping the giant horse pills of magnesium down, so this is our option for right now. Hopefully today's infusion will stick.
My greatest frustration is that we're in this kind of holding pattern where nothing really changes. It's a struggle when there's no clear end in sight. I also worry what's going to happen when I go back to school in a couple of weeks? I know my parents will help out however they can, but they have their own lives as well. Like so many things with these diseases, we have to find a way to strike the right balance.
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