Monday, April 29, 2013

April 29, 2013

Today is Casey's last day of freedom before he gets admitted into the hospital and hooked up to a 24/7 IV.  Saturday we went to La Porte to a festival.  There were carnival rides, live music, food and drink stands, and a barbecue cook off all on the beach of Trinity Bay.  The people who were entered into the cook off had real elaborate set-ups.  They would have a blast at the pumpkin chunkin in Delaware.  We met some really nice people who had a set-up for the cook off and they recommended we go see Kemah boardwalk.  We went to Kemah and had a wonderful time.  We went to a cafe on the water and had a snack while watching the boats go by.  We left Kemah and went to Charlie and Melissa's house and had dinner with them, and their 7 year old son Conner.  They are so welcoming.  Conner has been working on dinner menus for when Casey comes to stay. 
Yesterday Casey had to be at the hospital at 8:30 am for some lab work.  His labs came back ok so we were able to leave before noon.  It was a nice day, so Casey and I walked to and from the hospital.  He spent the rest of the day getting caught up on meet entries and writing practices.  We drove around downtown Houston and went to Joe's Crab Shack and had a nice dinner.
Today we drove to Galveston and went to the beach.  We sat on the sea wall and put our feet in the water and had lunch overlooking the Gulf of Mexico.  The water was really warm.  We are back at the hotel.  Casey is starting to get real tired.  He is not sure if it is the cancer or the medication.
Tomorrow Casey is scheduled for 7:30 am at the hospital.  It's been really nice spending this time with him.  We have had a mini vacation interrupted by doctor visits.

Friday, April 26, 2013

April 26, 2013

Casey was poked with all kinds of needles today.  He had another bone marrow done and he some spinal fluid removed and chemo shot into his spine.  This clinical trial is from Germany, so his fluids need to be sent to the lab in Germany.  We got back to the hotel pretty early today (around 4:00 p.m.) so Casey laid flat until 6:00 and then we walked to a Vietnamese restaurant for dinner.  You don't want to be too active after a spinal tap, it can cause severe headaches.  Casey is loving watching the draft.  I really don't know enough about it to get too excited.  We rode the elevator with someone from York, PA today, last week we met someone from Indonesia.  Everyone has a story, and is looking for the best care available.  It is hard being so far away from home, but we hope they will find the cure for Casey's leukemia.  He has a case of stubborn PA dutch cancer.
Tomorrow we are going to be tourists.  We are thinking of going to San Antonio and then meeting up with Charlie and Melissa tomorrow evening.
Thank you to our neighbor, Jess Diirner for letting my girls, Annie and Bowie out to go to the bathroom in the middle of the day. And of course to Stevie for taking Casey's baby girl, Caroline.  All the puppies are well taken care of, but we sure do miss them.

Thursday, April 25, 2013

April 25, 2013

Today marks 2 weeks since we found out Casey's leukemia has returned.  Life has been crazy trying to get things arranged, so I apologize for not posting more often.
Casey and I are back in Houston for the 2nd time. We left Gary at home this trip, he will probably come out in 2 weeks.  I will return home in a week.  Casey's treatment schedule will be 4 weeks in Houston, 2 weeks at home, 4 weeks in Houston, 2 weeks at home, for a total of 5 treatment cycles.  This first cycle he will be admitted into the hospital on Tuesday and probably be there for about 12 days.  We met with the doctor today and had preliminary labs done.  Tomorrow he gets another bone marrow biopsy and a spinal, as well as other blood work.  He will have the day off on Saturday and Monday.  We are thinking of going to see Galveston.  It would be nice to see the Gulf of Mexico while we are here.  We will also go visit Charlie and Melissa Fry.  Charlie coached Casey at LAC and give him his first coaching job.  Charlie and Melissa have graciously offered to let Casey stay with them when I return home.  They will never know how much I appreciate that.  Big Bob called Charlie and told him he needs a room too, so that he can continue his vigilant hospital visits with Casey.  Charlie is very generous, but that is more than he bargained for, so he offered the dog house to Big Bob.  
I also got a phone call from Cherita at Middle Atlantic Swimming offering frequent flyer points for our next couple of flights to Houston.  I was so taken aback by their generosity, that when she called to tell me, I got choked up and tongue tied and could not appropriately express my gratitude.  The swimming community has been so wonderful and supportive.  When I picked up Casey at his house yesterday, our friend David Kupp had his guys there mulching Casey's flower beds.  Bruce Rettew dropped off a couple of dinners for Gary last night.  We may not know what we have ahead of us, but it is heartwarming to know that there are so many people behind us.  Thank all you so very much!

Saturday, April 20, 2013

April 20, 2013

We are back home in PA for a short time.  Casey will start treatment in Houston on Thursday.  He came home to get his things in order.  They are putting him into a clinical trial.  Thursday he will have blood work and another bone marrow biopsy done.  He will be admitted to the hospital on Sunday.  They will start administering his treatment at that time.  He will be in the hospital for 9 days.  After he is released, he will have the medicine continuously feed through an IV.  He will have to return to the hospital every other day to have his IV bag replaced and for check ups. The total time for the cycle is 28 days.  He will then have 2 weeks at home, and then returns to Houston to start another 28 day cycle.  He will go through a total of 5 cycles.  An old friend and coach, Charlie Fry lives in Houston and has offered to let Casey stay with them.  I can't tell you how thankful I am for that offer.  We will be racking up some serious frequent flier miles.  It will be a long summer, but if this finally kicks this disease, it will be time well spent.

Thursday, April 18, 2013

April 18, 2013
Unfortunately Casey's leukemia has once again returned.  So I am back to posting on his blog.
Tuesday afternoon, Casey's doctor told us he has an appointment at MD Anderson in Houston on Thursday morning.  Tuesday evening was spent trying to find an affordable flight and hotel room with less than 24 hours notice.  So here we are in Houston, TX.  The Reliant Center is next door to the hotel and a giant boot store is across the street.  We are not in Lancaster County any more.  We booked one way tickets, because there are so many unknowns.
We arrived at MD Anderson at 9:30 this morning and finally finished up at 7:30 tonight.  The hospital campus is 3.2 miles in size.  The place is huge!  Casey had blood work and a bone marrow biopsy before seeing the doctor.  The equipment they have can tell  them what type of cancer cells he has.  They will select his best course of treatment after all of these tests are in.  I thought Hershey Medical Center was big.  Now it looks small.  Tomorrow it is back to the hospital to find out what course of treatment they recommend.  And if time allows, maybe I will have to buy a pair of cowboy boots!
I will let you know.