Casey had another successful visit to Houston. His immune system is strong enough that they gave him his baby vaccines again. His liver function is good so he is off of his liver pills and off of his anti rejection medications. All is looking good. Stevie made the trip with him this time, so Gary and I stayed at home with all the dogs. We had a total of 5 dogs this week (Casey's one, Stevie's two, and our two). I have been walking all 5 of them at least once a day. I got a round of applause yesterday as I walked by a neighbors house. Most people just think I am nuts. The pups rearrange my furniture every day while I am at work, but other than that, they have been good. I also have Casey's 2 cats, so I think the furniture rearranging has a lot to do with pussy cat hunting.
The last couple of months have been busy. Gary and I spend as much time at the beach as we can. Casey has been to California twice, Buffalo and Bucknell. His kids did an outstanding job in the pool and I know he is very happy, but exhausted. He probably slept in his own bed 2 nights in the past 2 months, but I am sure it was all worthwhile. Stevie's husband Erik is in France and Germany for the next two weeks wrapping up his summer season, so it is nice for Casey and Stevie to have sibling time together. I am sure if they were going to plan a trip together, Houston and hospitals would not be their choice for a destination. Next week we will all get together in the Outer Banks of North Carolina to celebrate my mother's birthday.
Casey is not the only miracle we have going on these days. Stevie and Erik are going to have a baby girl in January. Originally she was carrying 2 baby girls, but lost one. It has been a real storm of emotions. Erik is also a cancer survivor, so her getting pregnant was a very big deal, we were elated. Then we found out it was twins, we were a little overwhelmed. We got used to the idea and we were anxious. Then Stevie found out one of them was not doing well, we were hopeful. When the second heartbeat stopped, we were all very sad. We are now at peace and looking forward to welcoming our new miracle this winter. I just hope she is not as big as her daddy, or Stevie is in for a long labor and delivery.
Thursday, August 14, 2014
Tuesday, June 3, 2014
June 3, 2014
Casey had another visit to Houston on May 14th. I went with him. We arrived on Tuesday evening, checked into our hotel and had some delicious Texas barbecue for dinner. His first appointment was at 9:00 at the hospital. He had his blood drawn, had a survivorship meeting, had a bone marrow biopsy, saw his transplant doctor, had a bone density test and then got an immune globulin infusion. We ran from appointment to the next with no time for lunch. I wore my shoes out that day. He had a bit of a reaction to the infusion, so they gave him some medicine and slowed the drip rate. We finally left the hospital at 11:00pm and caught a 9:00am flight into North Carolina. Casey met his team in North Carolina and I got a connection into Baltimore. I was waiting for my connection to Baltimore when I saw a Shane, a friend that got married and moved to the Chapel Hill area. He was on my flight!! They were going home for a long weekend, his family was throwing a baby shower for him and his wife. We sat together on the plane and talked the whole way home. It was the quickest flight I was ever on. It has been a couple of years since I saw him, and I had never met his wife, so we had a lot to catch up on. I stopped at Stevie's house on my way home, so it was a good day.
Casey finally got all the results of his tests yesterday. The years of chemo have left him with some thinning of his bones, so he is on a vitamin D supplement. He is now 100% Stevie, with no signs of leukemia. Any of you who know Stevie, know how stubborn she is. There is no way her DNA will allow any of those darn leukemia blasts to get in! They also discontinued the shots he was giving himself for the blood clots, and have cut his visits to his doctor in Hershey down to every other week instead of weekly. He is now able to do most everything. He still has to be careful with his immune system. But all in all it was a fantastic 6 month post transplant visit.
Casey finally got all the results of his tests yesterday. The years of chemo have left him with some thinning of his bones, so he is on a vitamin D supplement. He is now 100% Stevie, with no signs of leukemia. Any of you who know Stevie, know how stubborn she is. There is no way her DNA will allow any of those darn leukemia blasts to get in! They also discontinued the shots he was giving himself for the blood clots, and have cut his visits to his doctor in Hershey down to every other week instead of weekly. He is now able to do most everything. He still has to be careful with his immune system. But all in all it was a fantastic 6 month post transplant visit.
Tuesday, May 6, 2014
May 6, 2014
Casey and I are gearing up for another trip to Texas. In April, he went alone. He flew in one day and out the next. This trip will include a bone marrow biopsy. We will fly from Baltimore into Houston on Tuesday and from Houston to Raleigh on Thursday. Casey will stay in Chapel Hill, but I have to return to Baltimore, so I can get back to work on Friday. I did schedule my layover at RDU a lot longer than I normally do. There is nothing finer than Carolina in the spring time. Casey's swimmers are meeting him in Chapel Hill for the Meet on the Hill.
April 21st was the 8 year anniversary of Casey's original diagnosis and May 3rd was Casey's 32nd birthday. He has been living with leukemia for a quarter of his life. I never saw that one coming. Some people celebrate their transplant or remission dates. Unfortunately in Casey's case, the diagnosis date is the easiest to keep track of. Gary's yearly physical had him going to the urologist for a prostate biopsy and for a CT scan of a spot on his lung. Fortunately, we got the news on April 21st and May 2nd that they are benign. So we had a lot to celebrate. Stevie, Erik, Casey, Gary and I (and the 5 dogs) had a wonderful weekend at the beach. I am hopeful that the celebration continues on our trip to Texas next week.
April 21st was the 8 year anniversary of Casey's original diagnosis and May 3rd was Casey's 32nd birthday. He has been living with leukemia for a quarter of his life. I never saw that one coming. Some people celebrate their transplant or remission dates. Unfortunately in Casey's case, the diagnosis date is the easiest to keep track of. Gary's yearly physical had him going to the urologist for a prostate biopsy and for a CT scan of a spot on his lung. Fortunately, we got the news on April 21st and May 2nd that they are benign. So we had a lot to celebrate. Stevie, Erik, Casey, Gary and I (and the 5 dogs) had a wonderful weekend at the beach. I am hopeful that the celebration continues on our trip to Texas next week.
Wednesday, March 26, 2014
March 26, 2014
We made it home last Saturday evening March 15th. We left on Thursday immediately following Casey's bone marrow biopsy. There was no waiting for results, he was ready to get on the road. It was a long drive. We took a different route home than we took down. We went through Arkansas. Arkansas was a boring state. We got to Nashville on Friday around 5:00. Since I had never been there, we decided to stop for dinner. We hit the downtown area and traffic was at a crawl and we really didn't have a plan, so we ended up getting back on the highway and stopped to eat at a Chilie's. We thought Bristol would be a good stop for the night, only to find a NASCAR race was being held there that weekend. Another foiled idea. Thank goodness for satellite radio. I am sure Casey enjoyed my singing. I really do a good rendition of Billy Joel's Piano Man. When we got to Casey's house, we were greeted by 3 excited dogs.
The following Thursday. Casey went with his swimmers to a Virginia Tech for sectionals, where he was very proud of the way they swam. I don't know why he didn't request my company for that road trip.
He had a little glitch with his prescription and it took 3 days to get it squared away. In Houston he had his personal pharmacist, Jason, who would be there during his doctor visits and was always available to take care of problems. That was a service that I am sure he will miss. Back to the real world which includes income taxes, but I know he rather do taxes and argue with CVS than be back at the hospital. He will have to make a trip back out to Houston for an appointment on April 9th. Until then he is enjoying freedom and good health.
The following Thursday. Casey went with his swimmers to a Virginia Tech for sectionals, where he was very proud of the way they swam. I don't know why he didn't request my company for that road trip.
He had a little glitch with his prescription and it took 3 days to get it squared away. In Houston he had his personal pharmacist, Jason, who would be there during his doctor visits and was always available to take care of problems. That was a service that I am sure he will miss. Back to the real world which includes income taxes, but I know he rather do taxes and argue with CVS than be back at the hospital. He will have to make a trip back out to Houston for an appointment on April 9th. Until then he is enjoying freedom and good health.
Wednesday, March 12, 2014
March 12, 2014
I arrived last Wednesday and Gary left. My plane arrived on time and Gary's was delayed. I got off of the plane and Gary was standing there. It was nice to see him for 5 minutes.
We just got back from the hospital. Casey has been cleared to leave tomorrow. He does have a rash which might have prevented him from being allowed to go home. His rash has gotten a lot better in the past week, so they removed his port and told him after his bone marrow biopsy tomorrow afternoon he is able to go home. He was rehearsing what he would say if they told him no. He is so ready to get home. He does have to come back for another appointment on April 9th. We did have a lot time away from the hospital this week. We went to the driving range, the rodeo and the park. I even got him to go to the mall with me. Things really are bigger in Texas, the mall is huge. There were also swim meets to keep up with online.
Now we are starting to pack up the car for the long drive home. Hopefully I can bring some of this warm weather home with me.
We just got back from the hospital. Casey has been cleared to leave tomorrow. He does have a rash which might have prevented him from being allowed to go home. His rash has gotten a lot better in the past week, so they removed his port and told him after his bone marrow biopsy tomorrow afternoon he is able to go home. He was rehearsing what he would say if they told him no. He is so ready to get home. He does have to come back for another appointment on April 9th. We did have a lot time away from the hospital this week. We went to the driving range, the rodeo and the park. I even got him to go to the mall with me. Things really are bigger in Texas, the mall is huge. There were also swim meets to keep up with online.
Now we are starting to pack up the car for the long drive home. Hopefully I can bring some of this warm weather home with me.
Tuesday, March 4, 2014
March 4, 2014
Gary is with Casey and they were able to get to tour NASA and go to the dog races. They were hoping to be able to golf, but they were not able to remove Casey's port. They have not been able to get Casey's liver function to a comfortable level with pills instead of the intravenous medicine. All of Casey's buddies have now gone home, so he is stuck with mom and dad. I really appreciate all of you taking time out of your busy schedules to spend time with him. There are so many people who have supported us throughout this ordeal. I don't know how we could have done it without all of you. A huge thank you to my parents who have paid the rent on the apartment and have been very gracious with allowing me to take time off of work. A lifetime of gratitude to Charlie, Melissa and Connor for giving Casey, not only a place to stay, but a home. Middle Atlantic swimming for donating their airline miles. Cherita has had an arduous year, but it has been a pleasure catching up with her. Thank you to my sister, Debbie for being the world's best aunt and keeping on top of all of the medical end of things. Thanks to LAC, Kyle, Derek and Tyler for putting together fund raisers and thanks to everyone who participated in them. I don't know how we would have made it through this past year without your support. Cancer is expensive. Most of all thank you to Stevie for donating her bone marrow without ever a second thought. I leave for Houston tomorrow to get Casey ready for the drive home. I know the thing he is looking forward to most is seeing his dog, but she really has not had it too bad at our house. She might not want to go home.
Thursday, February 20, 2014
February 20, 2014
The endoscopy did reveal a low grade of Graft vs Host disease, but Casey is able to eat and has put on a few pounds and they have reduced his hospital visits to one time a week. So far, so good. He had a nice time with Eric and Erik, now Griff is with him. The dook vs UNC basketball game is rescheduled for tonight. I suggested Casey and Griff go watch if on a big screen, but Eric and Casey said Griff is not allowed out in public during a UNC basketball game, especially against dook. These boys do love their alma mater. Go Heels! I think having his buddies with him is making the time a lot less tedious.
We were hoping to do a little bit of touring on our drive home, but with his extended stay that is not going to happen. I did want to stop in New Orleans, but then found Mardi Gras would be going on during our original time frame, and that would be a really bad place for Casey to be. Maybe since Mardi Gras will be over, just a quick beignet will work. Houston has been nice and warm. The only time they get a cold snap is when I go out. Casey will have to return on a monthly basis for a few months. He will have to go periodically for the next 15 years. We do have a pretty good lay of the land at this point.
Good Luck to all LAC college, high school, and age group swimmers as you head into your championship meets.
We were hoping to do a little bit of touring on our drive home, but with his extended stay that is not going to happen. I did want to stop in New Orleans, but then found Mardi Gras would be going on during our original time frame, and that would be a really bad place for Casey to be. Maybe since Mardi Gras will be over, just a quick beignet will work. Houston has been nice and warm. The only time they get a cold snap is when I go out. Casey will have to return on a monthly basis for a few months. He will have to go periodically for the next 15 years. We do have a pretty good lay of the land at this point.
Good Luck to all LAC college, high school, and age group swimmers as you head into your championship meets.
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