Casey and Stevie thought they were funny by sending me this photo. Well we will see who gets the last laugh. I am posting it here for everyone to see. What a couple of geeks.
Thursday, November 14, 2013
November 14, 2013
Stevie is home for a few days and Casey gets admitted into the hospital tomorrow. They had all of their pre-testing and counseling done this week. They took several pints of blood from Stevie and Casey had dental, vision, heart and lung tests. He also got a shot of chemo in his spine. I will post Casey's mailing address tomorrow. Someone asked me why they are transplanting his bone marrow. The simple answer is Leukemia is cancer in your blood. Your blood is produced from your bone marrow. Casey's bone marrow is making bad blood. It does get a lot more complicated from there with B cells vs T cells, Philadelphia positive or negative, etc. Prior to the transplant they will kill all of Casey's cells to make room for Stevie's cells to take over. This will leave him with no immune system, so he will be locked in his hospital room for a while. The intense amount of chemo leave him with no desire to leave his bed. They did say he might not get as sick this time since he has no cancer in his system at this time. Since leukemia is in your blood, it travels throughout your whole body and can hide in places like your brain, gums, eyes, etc. We are not sure why none of the other transplants worked, but feel confident he is getting the best treatment available and they are being very thorough.
Casey and Stevie thought they were funny by sending me this photo. Well we will see who gets the last laugh. I am posting it here for everyone to see. What a couple of geeks.
Casey and Stevie thought they were funny by sending me this photo. Well we will see who gets the last laugh. I am posting it here for everyone to see. What a couple of geeks.
Monday, November 11, 2013
November 11, 2013
Stevie is in Houston to start her process. She and Casey have a busy week full of tests and appointments. Stevie's first stop in Texas was to buy a pair of cowboy boots. Poor Charlie tried to move 1500 miles away, but she found him. Casey's main objective was to get in a round of golf while he had his port removed. He and Charlie went out yesterday morning.They will put a new port in for the transplant tomorrow. This one will be in his chest instead of his arm. Stevie will coming home for a swim meet on Thursday and then back out there on Wednesday, November 20th.
Gary and I went to Baltimore on Saturday and had dinner with Stevie and Erik at a French Bistro owned by one of their swimmer's parents. It was a fabulous evening. The place is called Crepe Du Jour. If you are ever in the Mt. Washington area of Baltimore, you should check it out. We also had a birthday party for Stevie's dog, Kona and Casey's dog, Caroline. They were 2 years old on November 6th.
Gary is going to Houston on Saturday, November 23rd through December 3rd and Stevie will be coming home on November 25th. Gary will be with Casey on Thanksgiving. Casey will have full body radiation and some intense chemo. I am not sure if he will be able to eat any turkey this year, but I am sure he will try. Thanksgiving dinner is his favorite meal. We can always have Christmas and Thanksgiving in March. We will worry about that later, just taking this one step at a time.
Gary and I went to Baltimore on Saturday and had dinner with Stevie and Erik at a French Bistro owned by one of their swimmer's parents. It was a fabulous evening. The place is called Crepe Du Jour. If you are ever in the Mt. Washington area of Baltimore, you should check it out. We also had a birthday party for Stevie's dog, Kona and Casey's dog, Caroline. They were 2 years old on November 6th.
Gary is going to Houston on Saturday, November 23rd through December 3rd and Stevie will be coming home on November 25th. Gary will be with Casey on Thanksgiving. Casey will have full body radiation and some intense chemo. I am not sure if he will be able to eat any turkey this year, but I am sure he will try. Thanksgiving dinner is his favorite meal. We can always have Christmas and Thanksgiving in March. We will worry about that later, just taking this one step at a time.
Wednesday, October 30, 2013
October 30, 2013
I arrived in Houston yesterday. Due to a late flight and a slow shuttle, I missed Casey's appointment with Dr. Thomas. He filled me in. They are going ahead with the transplant as scheduled on November 22nd. Casey immediately had his pick line removed. Today we were apartment hunting. We found 2, now we have to choose. It is like House Hunters MD Anderson. Stevie will come down here on November 10th and start her testing on November 11th. Charlie and Melissa are allowing her to stay at their house. I know Stevie is anxious to see them. Charlie was her coach throughout high school. She hasn't seen Connor since he was a baby. Casey is having Caroline look into flights so he can spend Christmas with his puppy. She wants to fly first class, so I think we will have to leave her at home.
Tomorrow it is back to the hospital for EKG, echo cardiogram, complete pulmonary function and dental exams and a clinical visit with the clinical research coordinator. This week has turned out different than we had planned, but we are getting a lot done,
Tomorrow it is back to the hospital for EKG, echo cardiogram, complete pulmonary function and dental exams and a clinical visit with the clinical research coordinator. This week has turned out different than we had planned, but we are getting a lot done,
Monday, October 28, 2013
October 28, 2013
My last post I said Stevie is not a donor match for Casey, well Friday evening Casey got a phone call saying Stevie is a match and she needs to be in Houston on November 11 for pre-testing. They are going to do a bone marrow transplant. Casey's previous transplants have been stem cell transplants. They will put Stevie under and stick her with 80-100 needles in her hip to scrape out her bone marrow. I think this will take place around November 16th. Casey got the phone call while he was on deck coaching. Pretty much they told him in 3 days he would be going to Houston and staying until mid March. Kinda got his head spinning! Stevie was right on it, she booked her flight (one way), she is very excited to be able to do this for Casey. She will now have something to hold over his head forever!
Casey left today, and I will be leaving tomorrow for Houston for what we thought would be round 5 of 5 treatments. I suppose we will be apartment hunting instead....I am not really sure. The transplant team said they still have to run it by his oncologist. Dr. Thomas is a force to be reckoned with. If she says no, there is no way the transplant is happening as scheduled. I sure am glad to have her on our side. I am sure we will know more tomorrow.
Because holiday flights are hard to get at a reasonable price, Casey booked his flight home already for the day before Thanksgiving according to his treatment schedule. I have been nagging him for years about his procrastination. Well I guess this one came back to bite me. Will let you know more when I find out!
Casey left today, and I will be leaving tomorrow for Houston for what we thought would be round 5 of 5 treatments. I suppose we will be apartment hunting instead....I am not really sure. The transplant team said they still have to run it by his oncologist. Dr. Thomas is a force to be reckoned with. If she says no, there is no way the transplant is happening as scheduled. I sure am glad to have her on our side. I am sure we will know more tomorrow.
Because holiday flights are hard to get at a reasonable price, Casey booked his flight home already for the day before Thanksgiving according to his treatment schedule. I have been nagging him for years about his procrastination. Well I guess this one came back to bite me. Will let you know more when I find out!
Thursday, October 3, 2013
October 3, 2013
Since my last post, we found out that Stevie is not at match for the transplant. We still do not know what is going to happen with that.
My sister, Debbie had to go to MD Anderson to do a lab inspection. Of all the hospitals in the country and the timing of it all. She only does two a year. Debbie invited me to come out with her. All I had to do was get a plane ticket, she had the hotel. How could I pass that one up? I watched the prices of the flights and thought it wasn't meant to be, then a week before leaving a price came up that I couldn't turn down. Debbie flew out on Wednesday and did her inspection on Thursday and Friday. I flew out on Thursday, had dinner with Casey, Charlie, Melissa and Brandon. I got to meet the puppy, and Casey dropped me off at her hotel that evening. On Friday, I went to Casey's appointments with him and by that time Debbie was finished with her inspection. Debbie was able to slip away from her inspection on Thursday to go see Dr. Thomas with Casey for his weekly appointment. Casey joined us at Debbie's hotel on Friday and Saturday night. She was staying in a 5 star hotel. We always stay in the Quality Inn. There was a big difference. I felt like a celebrity at the Hotel ZaZa. Friday night we went out to dinner and a waiter dropped a whole tray of food on Casey. The restaurant was dark and we panicked thinking Casey was bleeding (not a good thing when you have blood cancer), turns out it was refried beans. Dinner was on Casey (literally) that night. The restaurant comped all of our meals. Casey had Saturday off, so we took Aunt Debbie to some of our favorite places. Casey and Lauren found a great place for brunch, so we went there, and I really enjoyed the Kemah Boardwalk, so we went there too. Sunday, Casey had his hospital visit and we checked out of the Hotel ZaZa, took Aunt Debbie to the airport and checked into the Quality Inn for one night. Casey and I went to the Woodlands Mall and took a water taxi ride and he went into Williams and Sonoma with me. He is much more patient than his father. Monday I flew home and Casey is back at Charlie's house. I can tell he is really feeling at home with them. It makes me feel so good. Charlie and Melissa are such wonderful people, I hope they know how much I appreciate all that they have done for us!!
Casey comes home on October 12 for 2 weeks and I am back to work and at home with Gary and the dogs, wondering where the next step will take us.
My sister, Debbie had to go to MD Anderson to do a lab inspection. Of all the hospitals in the country and the timing of it all. She only does two a year. Debbie invited me to come out with her. All I had to do was get a plane ticket, she had the hotel. How could I pass that one up? I watched the prices of the flights and thought it wasn't meant to be, then a week before leaving a price came up that I couldn't turn down. Debbie flew out on Wednesday and did her inspection on Thursday and Friday. I flew out on Thursday, had dinner with Casey, Charlie, Melissa and Brandon. I got to meet the puppy, and Casey dropped me off at her hotel that evening. On Friday, I went to Casey's appointments with him and by that time Debbie was finished with her inspection. Debbie was able to slip away from her inspection on Thursday to go see Dr. Thomas with Casey for his weekly appointment. Casey joined us at Debbie's hotel on Friday and Saturday night. She was staying in a 5 star hotel. We always stay in the Quality Inn. There was a big difference. I felt like a celebrity at the Hotel ZaZa. Friday night we went out to dinner and a waiter dropped a whole tray of food on Casey. The restaurant was dark and we panicked thinking Casey was bleeding (not a good thing when you have blood cancer), turns out it was refried beans. Dinner was on Casey (literally) that night. The restaurant comped all of our meals. Casey had Saturday off, so we took Aunt Debbie to some of our favorite places. Casey and Lauren found a great place for brunch, so we went there, and I really enjoyed the Kemah Boardwalk, so we went there too. Sunday, Casey had his hospital visit and we checked out of the Hotel ZaZa, took Aunt Debbie to the airport and checked into the Quality Inn for one night. Casey and I went to the Woodlands Mall and took a water taxi ride and he went into Williams and Sonoma with me. He is much more patient than his father. Monday I flew home and Casey is back at Charlie's house. I can tell he is really feeling at home with them. It makes me feel so good. Charlie and Melissa are such wonderful people, I hope they know how much I appreciate all that they have done for us!!
Casey comes home on October 12 for 2 weeks and I am back to work and at home with Gary and the dogs, wondering where the next step will take us.
Tuesday, September 17, 2013
September 17, 2013
Casey and Gary are in Houston. Casey was in the hospital from Thursday to Sunday evening. He has his handy chemo backpack on again. This starts round 4 of 5. Homeward stretch is in sight!! Now we are waiting to hear about the transplant. They do like to keep us guessing. Gary is coming home tonight, and Casey will go back to Charlie's house. Charlie and Melissa got a new puppy since he left. I am sure Casey is anxious to meet the baby!
Wednesday, September 4, 2013
September 4, 2013
Casey got home last week. We went up to our cabin in Sullivan County for Labor Day weekend. The weather was beautiful, great friends joined us, and the dogs got to swim, hike and run around in the mountains. We had a really good weekend. Unfortunately, Gary's Aunt Betty passed away on Saturday. I will really miss her and our phone chats that sometimes lasted over an hour. You always got the truth from Aunt Betty, she was never malicious or mean, just called it like she saw it. That is what I will miss most of all.
Casey met with the transplant team last week. They are talking about doing another transplant, but do not know what type they will do. Stevie is being tested again to see if she could be a donor. Since he has had a couple of transplants already, they are worried about the stress it would put on his organs to put him through another one. At this point, Casey has been transplanted with cord blood from France and from Duke, which did not take. Then he was transplanted with a young man who was an 8 out of 10 match. That one did not take, so they started the process for another transplant. During the preparation, something kicked in and he had a bad case of graft vs host disease, which actually allowed his body to accept the donor's cells. At this point, Casey has more DNA than CSI has in their labs. He went through having all of his baby vaccinations all over again. The doctors in Houston feel his sister would be a better match than an 8 out of 10. Stevie gladly got all of her blood work done. Now, we just wait to find out what happens next. The doctors in Houston are consulting his doctor from Hershey to come up with a plan. I love the fact that there are no egos involved and they work together.
Gary and Casey will head back to Houston on September 11th. Meanwhile, we will try to spend as much time with Casey as we can.
Casey met with the transplant team last week. They are talking about doing another transplant, but do not know what type they will do. Stevie is being tested again to see if she could be a donor. Since he has had a couple of transplants already, they are worried about the stress it would put on his organs to put him through another one. At this point, Casey has been transplanted with cord blood from France and from Duke, which did not take. Then he was transplanted with a young man who was an 8 out of 10 match. That one did not take, so they started the process for another transplant. During the preparation, something kicked in and he had a bad case of graft vs host disease, which actually allowed his body to accept the donor's cells. At this point, Casey has more DNA than CSI has in their labs. He went through having all of his baby vaccinations all over again. The doctors in Houston feel his sister would be a better match than an 8 out of 10. Stevie gladly got all of her blood work done. Now, we just wait to find out what happens next. The doctors in Houston are consulting his doctor from Hershey to come up with a plan. I love the fact that there are no egos involved and they work together.
Gary and Casey will head back to Houston on September 11th. Meanwhile, we will try to spend as much time with Casey as we can.
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