Tuesday, March 30, 2010

Last night was a great night.  Casey got the okay to go to the LAC banquet.  Everyone was understanding and kept their distance.  The graduating senior boys blew Casey kisses.  They also had a slide show with photos of the boys shaving and flexing in their speedos.  Hmmmm.  I am sure those boys will be missed next year when they are off at college. When Nancy acknowledged Casey to everyone, they all stood up and were applauding him.  I cried.  I am such a flake.  Casey, Stevie and the whole coaching staff gave their awards presentation. At the end of the presentation Stevie tried to say thank you to everyone, but she cried.  I guess she inherited my flakiness.  But in all honesty, I feel as though the look on her face said it all.  There is no way to put into words the debt of gratitude we feel toward everyone.  Kasey Mann, for getting together the swim for Casey, everyone who showed up in support, the many cards, blog responses, just to mention a few things.  But most of all, knowing there are many shoulders out there to carry us through this ordeal.

Sunday, March 28, 2010

Casey had a good appointment this morning.  His white blood count was up to .7 his red blood has been holding steady, but here's the kicker, his platelets were at 47.  He didn't have to be transfused.  His last transfusion of platelets was on Friday. The white blood count needs to be over 1.0 for him to come out of seclusion.  They have gone up to .9 and then down to .5, so it is hard to get our hopes up.  We are at day 48, day 100 will be the first he can consider resuming any kind of normal activities.
Casey's stomach has been acting up, so they ordered some additional lab work on his pancreas as a precaution. The care he is receiving at Hershey is phenomenal.  They address every symptom, no matter how minute

Friday, March 26, 2010

I love the comments!  Danny DeVito as Big Bob is perfect!  Unfortunately, I am not up on who all the actresses are.  I hope the one you have picked to play me is really hot!  I know Matthew McConaughey is.  I have been waiting many years for him to go on tour with his bongo drums.
Casey had an appointment with his oncologist today, as well as his normal clinic visit.  His white blood count was at .5 today.  He was hoping they would be over 1.0 and we could go to sectionals tomorrow for the day.  It sure is tempting to go, but we realize he has come this far so we have to hang in there for a couple of more weeks before he can be out among people. The consequences are too big.  To be around Casey you would not know he is sick.  Just bald.  He will have to have all of his baby vaccines all over again (measles, mumps, rubella, hepatitis, etc.)  All of that was wiped out.  I don't know if you have a traditional transplant from a vaccinated person, if you have to have all of your shots again, or if it is because of the cord blood.  Dr. Ehmann assured us that cells have engrafted, or his counts would be at zero.  Dr. Ehmann was thrilled to hear Casey was golfing and strongly encourages exercise.  He has to stay out of the sun, out of water, and away from people.  I guess he'll have to take the dogs for many walks.  Annie and Bowie are thrilled!

Tuesday, March 23, 2010

We got a good laugh out of the comments to the last post.  I will have to check out American Idol.  Right now the singer I see has the same haircut as Casey does, but his skin tone is much darker.  Oh, his name is Michael, so it can't be the same guy, I'll have to keep watching.  Hey, Emily (Miley Cyrus) is on American Idol too!  The Tar Heels are on,  but the game before them is in double overtime, so I will have to change the channel soon. 
Casey's eye doctor was out sick today, so that appointment will be rescheduled.  His white blood count is still at .8, which keeps him away from people, and he needed another platelet transfusion today. I'm not sure what he is more impatient with, his counts not recovering, or this game that is keeping him from watching his Tar Heels.


Saturday, March 20, 2010

Casey and I played a round of pitch and putt golf today.  He beat me by 2 strokes.  You know you are a bad golfer when a cancer patient beats you!  He was not stopping, but when we got home he admitted that he over did it today.
Casey is back to going up for daily visits.  His regiment of going up every other day was short lived (he only had 2 days off).  He is starting to show mild signs of graft vs. host disease and his counts are down.  I am glad they are keeping on top of things.  Tuesday will be a big day for him.  He will see his opthamologist for the first time since his transplant.  Four years ago, he lost sight in his left eye while going through chemo and radiation treatments.  He started seeing Dr. Neely at Hershey Med. and then went to Will's Eye Center in Philadelphia to see the top eye cancer specialist in the country, who confirmed his eye doctor in Hershey is doing a great job.  He went through 2 eye surgery's and other than loss of some peripheral vision things are looking good.  She does some periodic laser treatments to him, and reattached his detached retina.  I love this lady, but you never know what she is going to find.
We have been watching the state swim meet on television, and it occurred to me that Casey's story would make a good movie of the week.  Coaching these kids from his hospital bed, them turning in great times and places, swimmer of the meet and meet record, etc.  I have a call in to Sandra Bullock, I think she would do a good job of playing me.  Maybe Will Farrell could play Gary.  We need to get Danny Devito in there somewhere.  Any suggestions on who could play Casey...Stevie...Emily....how about Margaret, Mrs. Karr, etc.  I would love to hear your thoughts.  Maybe we can turn this into a mini series.

Thursday, March 18, 2010

Casey had another day off today, and what a beautiful day it was outside.  He spent the day playing catch with the dogs and watching the swimming results.  The results from the swim meet were incredible.  Congratulations on great swims to everyone.  PA high school states is an electric atmosphere.  Everyone, swimmers and fans, are pumped up.  I miss that meet, but I don't miss standing in line for hours.  Tonight everyone will kick back and celebrate.  Have fun.  These are memories that you will always cherish. 
Casey's counts have pretty much been the same.  White blood is .9 which means he is still neutropenic, so he can not be around people or eat any fresh foods.  He has been getting a lot of cards which he enjoys.  I wish we could respond to the blog responses individually, but we can't.  The responses have been a lot of fun to read.  I especially wish I could respond to some of the people who have posted that I haven't heard from in a long time.  It is nice to know you all care.  Please know how much your support has been a shining light through all of this. 
Thank you,

Tuesday, March 16, 2010

Tuesday March 16th

This is Casey writing today.  I wanted to take the opportunity to thank everybody for the encouraging comments (I read every one of them).  I also want to thank my mom for creating and maintaining this blog, it's a lot easier than texting or calling everybody I know or who is interested in my progress.

Yesterday the nurses gave me off today.  It was the first day I was not at the hospital since January 30th.  The care I get and people up there are awesome but it felt so good to not have to make that 50 minute drive to Hershey even if it's just for one day.  My progress has been slow but that is to be expected with a cord transplant.  On the positive side, my oncologist told me I was 1 of 4 of his patients not to get an infection in the 30 days after the transplant.  He's been doing transplants for 15 years and does about one a week.  I know all the prayers I've gotten from people that follow this blog and my church congregation had a lot to do with that.

Lastly, I would like to wish all of the LAC swimmers best wishes (not good luck, there is no luck involved in swimming) at the upcoming PIAA state championships at Bucknell University.  I would also like to send my best to my former swimmers as well, especially Caitlyn Karr.  For those who don't read the comments, Mrs. Karr has posted after almost every entry and that means a lot to me.

Again, I can't say it enough, Thank You so much for all of the support and continued support!!!


Sunday, March 14, 2010

Gary and I had a great night out at the Carrie Underwood concert.  By the time we got home Casey was in his pajamas and in bed.  If you ever need a babysitter, I will definitely recommend Kyle Salyards.  Kyle has been a really good friend to Casey ever since they were 10 years old and started swimming together.  Kyle is a year older than Casey, so Casey did have to endure some of the traditional boy rituals handed down from older swimmers.  It was his rite of passage.  Kyle delayed his entrance to the University of Georgia because he earned a spot on the Olympic team.  In 2000 Kyle had the fastest 200 breaststroke in the United States at the Olympic Trials (I always take credit for cooking him dinner before the race, so I'm sure that is what did it).  That was a night none of us will ever forget.  Casey and Kyle both graduated from college at the same time and came back to Lancaster.
Casey had a good check-up today at the Cancer Center.  He has gone 2 days without being transfused with red blood or platelets.  I didn't remember a day that happening before, but Casey told me there was one day that he didn't have to be transfused.  His counts came down, so I'm guessing the streak will end tomorrow, but I will happily take the 2 days in a row.  The staff at Hershey refer to his new cells as his baby girls.  They assure us the baby girls need time to grow.  If you know anyone who is pregnant, please encourage them to look into donating the umbilical cord blood.  Please see www.marrow.org for more information.  You do need to have a couple of months advance notice for the collection process.  It doesn't cost anything and can save somebody's life.
Today I told Casey, he has gotten such an education over the past 4 years.  I hope someday he will be able to use that knowledge to do something good.

Thursday, March 11, 2010

We had some great news yesterday, his white blood count was up to 1.3, today they are at 1.0, without any nuelasta.  Things are starting to happen.  We are here at Hershey for Casey's daily visit.  He is getting platelets and red blood today.  You know you have been here too long when the physicians assistant asks Casey how to work his IV pump.  They are going to do a special test to see what his body is doing with all of these platelets.  Looks like we are in for a long day.
Gary and I are going to a Carrie Underwood concert tonight.  He got these tickets months ago.  We have Kyle all lined up to babysit Casey tonight.  I bet that is the first time anyone has asked Kyle to babysit for them.

Tuesday, March 9, 2010

Tomorrow is a big day, Annie and Bowie turn 1 year old!  We have frosty paws and party hats which is the perfect combination for a great time. 
Casey's counts are not improving on their own, he continues to get shots of nuelasta, and transfused with platelets and red blood.  Nobody seems concerned, cord cells are slow to engraft. Because of headaches and low platelets, Casey had a CT scan on his head yesterday to make sure he does not have a brain bleed, which he doesn't.  Boy am I glad I didn't know about that until after the results were in.  His friend Eric, who was one of his teammates at UNC came up from Tennessee yesterday and spent the night.  Eric is in grad school at Vanderbilt and on spring break.  Casey was in Eric's wedding in June.  Today Eric took Casey up to Hershey.  You know you have a good friend when he leaves his bride to drive across the country and sits in a cancer center with you for 5 hours on his spring break.  Thank you Eric and Kathleen.
Well I have a party to get ready for!

Sunday, March 7, 2010

Today was a beautiful sunny day.  Casey went to Hershey for his daily check-up, but didn't need any blood or platelets today.  He did have a shot of nupogen on Friday and his white blood count was up to 3.0, which means he does have a bit of an immune system.   So tonight we went to Gary's dad's house for pizza Sunday.  We also took a walk around the block this afternoon, which might have been a little bit too much, but he made it.  Tomorrow Casey's friend from Tennessee, Eric is stopping by.  They will spend the night at Casey's house.  It is nice to be coming out of seclusion and slowly returning to a bit of normalcy.

Friday, March 5, 2010

Casey continues to hold steady.  Last night we went to his house to get some tax information together.  That might have been a little too much for him.  He gets really tired.  Right now he is soaking in an oatmeal bath to help sooth his rash. His counts are going down, instead of up, but they had stopped the shots of nupogen, so it is not too unusual. Today they gave him a shot to help.  He gets platelets almost every day.  So we are still hanging on and waiting for the new little baby girl cells to engraft.   Did I ever fill you in on that?  Not only are the cells from France and Duke, they are also both girls! 
Today the Kile's sent him some hot sauce that they get in California. We had spaghetti with hot sauce for dinner and Casey enjoyed it, but I made pig out of myself.  Next to Geri Woodring's, it was the best spaghetti ever.
We are coming into championship season for swimming, districts was tonight and tomorrow.   The kids swam really fast and made him happy. A new district record, sectional cuts, best times and several state qualifiers.   He is looking forward to having everyone healthy for states, and swimming even faster.  I have a feeling it is going to be hard to keep him down!

Wednesday, March 3, 2010

It's incredible what a day at home can do for Casey's health.  He is eating (not a lot, but at least it's something), his color is good and so is his attitude. He feels free not being hooked up to IV's for the first time in over a month.  He does have a rash which will have to be checked out tomorrow.  Stevie brought home a giant card made by his swimmers.  What a great group of kids.  They are hoping to see him at sectionals the last weekend in March.  I can't imagine that happening.  This is a long and slow recovery. 
It sure is nice sitting a home with my boy and my puppies (oh, and Stevie and Gary).

Tuesday, March 2, 2010

Casey is at home!  I went to pick him up this morning, but his platelets were too low for him to be able to go home and he was having nose bleeds today.  They transfused him with some platelets and around 4:00 he was released.  Before we left the hospital, he took one last Victory lap around the nurses station.  We picked the puppies up at day care on our way home.  They were so excited to see him.  I then had to have all of his prescriptions filled.  He will be taking anti-rejection medicine, antibiotics and stomach medicine.....but no more chemo!  He actually ate some dinner tonight (baked potato with hot sauce).  It's amazing how much better you feel when you are at home.  It was actually a little sad to say goodbye to the nurses (but not too sad), they are a great team who work well together with their main focus on keeping the patient comfortable.  Casey still has a long journey ahead of him.  I pray he can stay healthy, continue to get stronger and be patient while the new cells engraft.

Monday, March 1, 2010

Day +21.  Great news.  Casey gets to go home tomorrow.  His white blood count is 1.0, things are looking good.  I don't have to wear a mask anymore, and they took most of the signs off of his door (Transplant Isolation, Nuetropenia precautions, Contact Isolation, Beware of the Bob, etc.).  I guess I will have to start cooking again, but first I better get some food. Hopefully when he gets home he will be able to eat something.  Nothing tastes quite right, the nurses just made some recommendations on what to try.  He said put hot sauce on everything, it works.  Meat is not usually a favorite, but baked potatoes are usually a good bet.  We'll give that a try.  
Casey said tomorrow will be the first time he will have shoes on in over a month.  If he had to miss a whole month, this was a good one to miss.  I am looking forward to tomorrow.