Thursday, August 14, 2014

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.

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.

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.

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.

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.

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.

Wednesday, February 12, 2014

February 12, 2014

Part one and two of the mini transplant went off without a hitch. The only hitch has been the weather. Eric is not able to get here tonight due to the storm in Atlanta. My flight was cancelled to go home today too. Eric is now scheduled to arive tomorrow and I am booked on flight home on Friday. This actually works out well with his modified transplant schedule. He had to remain in the hospital until 3:00 which would mean I would have to leave for my flight and he would have to drive himself back to the apartment. The boost is done as an outpatient. It is called the Sleeping Beauty. The cells are somehow infused with cancer killing molecules to replace his defective chromosone which causes his blood cancer. It is injected into him where it lays dormant unless it is needed to go to work. If the cancer comes back, it should attack and kill the leukemia blasts. The test for graft vs host have not been competed, but his doctor does feel thsre is some present. The treatment for GVHD is steroids which will kill the Sleeping Beauty cells, but his doctor feels it is worth the risk to move ahead with the boost. His doctor told him he has to stay in Houston for 4 more weeks, which did not make Casey happy. He is so ready to get home to his dog, swimmers and normal life. The UNC vs dook game was also cancelled for tonight. It has not been the best day for Casey. I am anxious for Eric to get here as a nice and welcome diversion. You guys are the best! Also, thank you to Jen and Kathleen for letting Griff and Eric come out here to spend time with Casey.

Saturday, February 8, 2014

February 8, 2014

I'm here in Houston with Casey. The weather has been cold here too, but there is relief in sight. Predicting high 60s today and 70s tomorrow. We have a busy week. We spent most of the day at the hospital on Thursday for his normal treatment and check-up. Yesterday he had an endoscopy. He was not allowed to eat or drink anything after midnight and they only did the procedure at 4:30pm. Monday he goes to the hospital for normal treatment and check-up. The mini transplant which was scheduled for Monday and Tuesday, is now scheduled for Tuesday and Wednesday, which will give them time for the pathology report on the endoscopy. The glitch is that I am scheduled to go home on Wednesday afternoon and Eric is scheduled to arrive. The doctor is aware of the schedule conflict and is working with us to have Casey be finished early on Wednesday. I hope he is able to drive me to the airport. I can always call a cab, if needed. The most important thing is getting Eric here on time for the UNC vs dook basketball game on Wednesday night. Eric is a friend from UNC. Brings back fond memories of watching UNC basketball in 2005 on Rosemary Street with a house full of students. We watched UNC win the semi finals, followed by a trip to Franklin Street where everyone was celebrating and having a great time. 2 days later they went on to win the national championship, but I was home in PA and missed that celebration. I have so many great memories of Chapel Hill, there was never a dull moment.
I pulled the January page off of the calendar in Casey's apartment to find February is well marked with the Great Event of February 9th. Tomorrow is Stevie's birthday and she surely does not want it to go un-noticed. She left her mark! Sorry, I will not be home to celebrate with Stevie, but I didn't forget. I hope you have a wonderful day. I will make it up to you! I got a whole bunch of rubber gloves, masks and syringes for you.

Sunday, February 2, 2014

February 2, 2014

It is official. The groundhog has predicted 6 more weeks of winter. I am looking forward to spring.
Casey's skin biopsy came back clear of graft vs host, so the dates for the mini transplant are February 10 & 11th. Stevie's birthday is February 9th, so it is fitting that he gets her cells on Monday the 10th. I will be in Houston with Casey at that time. Last week when my sister, Debbie was with Casey, they went over all of his instructions for when he gets home to Pennsylvania, along with a packet of information for Dr. Ehmann, his oncologist at Hershey. Good to have Aunt Debbie with Casey for that because she speaks nerd. All of those years spent in the microbiology lab have made her fluent. We are all getting prepared to bring Casey home. I took his dog to the vet and got her annual shots. They assured me they are not live vaccines, but I still feel the need to be extra cautious and have them done before he gets home. We do not have an exact date, but March 2nd is day 100, so we are planning on that week. We have Casey sitters all lined up to that date. Two of Casey's college friends and team mates are each taking a turn. Eric Mohr will be coming from Atlanta and Griff Helfrich will be coming from San Francisco. That will be a special treat for Casey, not only to have them there to chauffeur him around, but to get to spend time with them. Stevie's husband, Erik will also His friend Kyle Salyards is with him now. They usually get together for the Super Bowl, so tonight will somewhat be like a typical Super Bowl Sunday for Casey. It is so very nice of you all to do this for all of us. Casey has a lot to look forward to in the coming weeks.

Thursday, January 23, 2014

January 23, 2014

I am at home in Pennsylvania in the cold weather, while my sister Debbie is with Casey is in Houston. Stevie spent some time with Casey after Lauren left. Debbie is taking good care of him. They are going to do what they call a boost or mini transplant. They saved some of Stevie's cells, which they are infusing with the targeted chemo and will turn Stevie's cells into killer cells. Theoretically, they will attack any leukemia blasts when they start to form. Stevie's cells are busy at work kicking butt, but knowing Stevie, I wouldn't expect anything less. Yesterday Casey had pulmonary tests, ekg, and chest xrays to make sure he is deserving of Stevie's cells. Casey does have a rash, so today they did a skin biopsy to make sure it is not graft vs. host disease. They are looking at the first week of February to do the boost. Casey continues to hook up his IV daily and give himself shots for the blood clots between hospital visits.
Stevie and Casey went to Austin and watched the Grand Prix swim meet. They saw some people they know. Some of the swimmers from Stevie's swim team were there. Kyle will be going out next. I am sure Casey will enjoy having him there to watch the Super Bowl. Casey's college friend, Griff with be going out in February too. We are getting closer to day 100 and bringing Casey home.

Sunday, January 12, 2014

January 12, 2014

Today ends my stay in Houston. Casey's friend Lauren is here to take over. Our past week has continued to bring promising improvements to Casey's health. His counts are rebounding and he is feeling good. We took a metro ride through the city on Saturday. Wednesday we went across the street to the Reliant Center to the boat show. Friday, we took a drive to College Station to watch Emily and her Georgia bulldogs take on Texas A&M. The facility was real nice and the meet was exciting (the final score was 150 UGA and 150 A&M, tie), and it was great to see Emily. Yesterday we went to watch Connor (Charlie & Melissa's son) swim in an age group meet. Unfortunately, we left after the first event. Casey should not be around kids and in closed areas. You would think we would know better, but a least we got to see Connor swim one event.
We filled in time with trips to the hospital, where the doctors are impressed with Casey's recovery. They do not know how stong willed Stevie and her cells are. I saw Betty Lou asked if this means there will be two Stevies, all I can say to that is could there ever be two Jenns?
The weather is sunny and 70 and so is the outlook!
Thank you for your continued support.

Thursday, January 2, 2014

January 2, 2014

Happy New Year everyone! 2014 is starting out to be a fabulous year. The results from Casey's bone marrow aspiration and biopsy showed he is fully engrafted, 100% Stevie, with no leukemia or any disease. His blood counts are climbing without the help of neupogen and he is feeling good. He gets daily IV infusions of magnesium and anti fungal medicines and daily shots for his blood clot, which we can do at home. We go into the hospital on Mondays and Thursdays for check ups. Yesterday we had our traditional pork and saurkraut and then we walked the whole way around Reliant Stadium (Bill O'Brien's new home)which is right across the street from the apartment.
Gary will be going home tomorrow to snow, cold weather and crazy puppies. I get to enjoy another week of 60 degree weather.