Wednesday, August 25, 2010

Casey had another great check-up yesterday.  His blood counts are now in the normal range and he is feeling great.  Friday is day 100, so we were expecting a bone marrow biopsy, but they ran out of time.  Casey was not disappointed.  He is not off of the hook, they have one scheduled in 3 weeks.  I am so amazed at how well Casey looks and feels.  He was seen by a fellow (hematology/oncology doctor in training) yesterday prior to Dr. Ehmann. The fellow (who is a graduate of Wilson High School) was briefed on Casey before he came in to see him.  I can tell I am not the only person who is amazed with Casey's recovery!
Casey and Stevie spent 10 days in California the week of Aug. 8th.  They had a swimmer competing in Nationals and Jr. Nationals.  She did so well she qualified to swim in a meet in Maui this week (but they didn't get to go along on that trip). Stevie has now moved out.  I am so grateful to her for putting her life on hold this past year to help us out.  Hopefully now, she can focus on getting a teaching job, and something will come her way.
As for me, I am having the best summer ever!

Monday, July 26, 2010

Sorry, it has been a while since I have posted.  Casey is doing incredibly well.  He had his central line removed, with a tear in his jugular, but that has healed and the stitches have been removed. He was able to take his first normal shower in over 10 months (and he kept it under 30 minutes).  Life is pretty much back to normal.  He is back to coaching full time, and has not even hit day 60 post transplant.  The second transplant took hold and Casey is looking and feeling great.  His hair has starting growing back, and his doctor visits have been cut back to once every three weeks.  These last couple of weeks have been better than I could have ever hoped for.  He is out golfing right now.  The only sad thing about this is he will soon be leaving me (and the puppies) and moving back into his own house.
As always, thank you for all of your prayers and support.

Tuesday, July 6, 2010

July 6, 2010

It is Stevie today! My mom and dad are taking a much needed week down at their place in Lewes, DE.  Casey, Kyle, Erik and I were all able to spend the holiday weekend with them and enjoy some time on the boat.  Casey had to be careful about the sun, but the boat has an awning and he wore a high SPF with long sleeves!  We were able to catch up with some old friends, the Donatos.  Casey and Justin met when they were both representing Middle Atlantic at the Zone All-Star Team when they were around 12-13 years old.  They remained in contact and both continued swimming for the University of North Carolina. Mr. and Mrs. Donato live close to my parent's place, Justin lives in Boston, and Amanda (Justin's sister) lives in Mount Joy.  It just so happened we were all in the area this past weekend so we went for a VERY GOOD dinner at the Donatos house.  It was a great night of old stories and catching up on new ones.  There were a lot of laughs!
On Sunday, Casey and Kyle went to the PGA event down by Philly.  They had tickets for the clubhouse and all of the VIP tents.  They had a blast and were able to see what they are doing wrong with their golf swings.  I doubt that will help though!  They need a lot more than that!
Casey hasn't been to Hershey since last Tuesday, but he will be going tomorrow.  He has an appointment to get the port out of his chest!!  There are 3 long tubes hanging out of his chest that they put medicines, liquids, etc into and take blood out.  This is it minimize all of the poking and prodding, but it gets in the way.  He can't sleep on his stomach, take a normal shower, swim, seatbelts rub, and it hurts to do a golf swing.  Casey has to flush it to keep it clean everyday.  When he was flushing it out today he threw the plastic syringe down like he would be spiking a football and said "Last time! Hopefully forever!"  So needless to say, he is pretty excited to get it out!  It's just another step closer to living a normal life!  Hurry Day 100!

Thursday, June 24, 2010

Ladies and Gentlemen, we have engraftment.  No more transfusions! Casey was released from the day hospital and they are looking at removing his central line sometime soon.  At this point all he needs to do  is go up to Hershey to see his doctor once a week and watch out for graft vs. host disease.  Casey is back to coaching almost full time.  His appetite is back, but he still tires pretty easily.  Life is good! 
On Saturday afternoon we are going to the fight on foundation golf tournament at Manor Golf course.  Gary and Big Bob are playing in the tournament.  Casey and I are just going for dinner.  Casey is not quite up to playing 18 holes, and nobody really wants to play with me.  Last year for my birthday a friend gave me a golf hat the says "Tiger Wutz",  I think you might have to be PA dutch to get that one.  The fight on foundation was started by Mindy Dull in honor of her husband, Derrick. Derrick was a great guy, who lost his battle with leukemia on December 6, 2008 at the age of 24.  The foundation was started to financially help adults going through cancer treatments.  There are many hours of missed wages, but the monthly bills are still due.  This foundation allows patients to concentrate on getting better without the financial worries looming over them.  Mindy offered to help Casey, but you guys did the swim for Casey, so he has been fine.  Casey has been so fortunate to have the support of all of you!  Thank you, Thank you, Thank you!!!!

Friday, June 18, 2010

Casey had another great check-up today.  He does not have to go back up to Hershey until his appointment with Dr. Ehmann on Tuesday.  He got the results of his chimerism test (which, I think, is basically a cell count).  The test revealed he is now 89% young stud, 11% duke baby, 0% french baby, and 0% Casey Coble.  It really is kind of freaky what they are able to do. I am all for it, as long as it makes him healthy again.  After his appointment, he spent the afternoon with his friend, Matt, who is laid up from a bicycle accident. Matt has been a really good friend to Casey through his ordeal.  He has stepped in to help coach at LAC and had his 4th graders make cards for Casey that were so entertaining.  Casey took Matt for xrays and then out to lunch.  What a team, I call them Cancer and Crash.
Enjoy your weekend.

Tuesday, June 15, 2010

Sorry it has been so long since I posted.  I have just been lazy.  Quick recap of what has been going on with Casey's counts.  In one weeks time his white blood count went from .1 on May 30th - 3.2 on June 5th, with the help of neulasta shots.  His count went down to 2.0 on June 7th and kept going down for a week, but 1.7 was as low as it got.  On Sunday his count went up to 2.0 and today was 3.2.  He has not had to have any transfusions for close to a week.  I am feeling pretty excited, but Casey is not letting his hopes get too high before his appointment with Dr. Ehmann next Tuesday.  I guess he has had too many disappointments to feel too confident.  Casey has been back on the pool deck part time, and he only has to go to Hershey every other day.  Life is starting to somewhat get back to normal....These puppies are still far from normal.  Life is never boring.

Thursday, June 3, 2010

Casey had another great check up today.  His white count is up to 2.3!  Stevie had the night off, so the four of us were able to go out to eat.  It's been 4 months, and I finally had a night off of cooking!  It sure was worth the wait.  I must admit, I did not have to cook this past weekend.  Casey's Aunt Debbie babysat and fed him on Saturday and Sunday so Gary and I could go to the beach.  Anyone who knows Debbie will realize it was Dwayne, and not her, who did the cooking.  Certainly no one was complaining.  I can't thank them enough for taking such good care of him.  Debbie took him up to Hershey on a day when he needed blood and magnesium, which was a 6 hour wait.  The next day was not nearly as long, but that is when he had the back pain.  Debbie and Dwayne took care of everything along the way, while I was on the boat in the bay.  Something seems wrong with that picture.  On Monday night, the doctor on call advised Casey to take 4 Motrim in addition to 2 doses of morphine, which made him throw up and his nose bleed (his platelets went down to 5).  At least he saved that for me!

Wednesday, June 2, 2010

Casey has been getting shots of neupogen daily to boost his counts.  Sunday his white blood count was .1, Monday .2, Tuesday .5 and today 1.0.  He is not neutropenic for the first time in over 3 months!  He is eating strawberries and loving it.  He had a salad for lunch today and if I know Casey, he will eat a hoagie tomorrow.  I am afraid to get too excited, after the last transplant his count was 1.0 for 3 days and then they started falling off again.  Today was his last shot of neupogen, so let's hope his counts hold.  On Monday, Casey was having severe back pain which morphine could not control.  I am hoping that was his bone marrow engrafting and growing some cells.....again, I can't let myself get too excited, but I can be hopeful.  Meanwhile, Casey will enjoy the foods he was not able to eat for a long time.  Maybe he will even get permission to go out to eat and I won't have to cook!

Friday, May 28, 2010

It's been a pretty uneventful week.  Casey's counts have been holding steady at .1.  On Wednesday he started getting shots of neupogen to boost the growth of his cells.  I have to remind myself that today is only day #9, since we had to start all over again.  The Phillies finally won a game, that's got to be a sign of things starting to turn around!
After his appointment yesterday, Casey and Stevie went to visit Paetyn Zeamer's parents.  Paetyn is an 11 year old girl who swims for five star, which is LAC's neighbor club.  Paetyn had a bicycle accident about 2 weeks ago and has a brain injury and is a patient at Hershey.  Paetyn is kept sedated so she rests while her brain heals.  The LAC swimmers all signed a card for her, which Casey and Stevie delivered to her mother.  Please keep their family in your thoughts and prayers.
Hoping you all have a fun and safe holiday weekend.

Sunday, May 23, 2010

Casey continues to do really well.  We took the dogs to Speedwell Lake yesterday for a little hike and a little swimming.  The dogs tend to jump and hop in the water more so than swim.  We will have to work on their doggie paddle stroke technique.  I will leave that up to Casey and Stevie.  The dogs really don't care about their stroke work, all they know is that they are having a lot of fun. 
Our friend Suzy is here from Thailand and spent the afternoon with us today.  She went along to Casey's appointment at Hershey and was asking everyone all kinds of questions.  After the appointment she went to chocolate world to buy candy to take home to her friends in Bangcock.  It is always full speed ahead with Suzy. It was great to see her again.
For now, we will keep making our daily trips to Hershey and wait for the new cells to engraft.  I will keep you posted.

Thursday, May 20, 2010

Casey was released from the hospital today and feeling good.  This is totally different from the first transplant when he was in the hospital for a month.  Other than the initial nausea and headache he is feeling good.  He is very tired, but it is hard to tell if that is from the transplant, or because they wake him up every 15 minutes in the hospital.
Casey entered his swimmers into the Meet on the Hill in Chapel Hill, NC this weekend.  I know he was excited about taking them down to his alma mater.   Stevie took the kids down and is calling to tell him what they are doing.  He is getting really homesick for UNC (and so am I!).  We have reservations for alumni weekend in September...can't wait.  I hope the kids have a great weekend.
For now, we have daily appointments at Hershey to keep us busy.

Wednesday, May 19, 2010

Transplant #2 is finished, and Casey is sleeping.  He is not feeling very good.  He has a headache and is nauseous, so they gave him some medicine to knock him out.  Dr. Ehmann was discussing the fact that male donors are preferred to female donors, because men are just better... to a room full of women (Casey was the only other male in the room), knowing that we couldn't do anything to him because we needed him to do the transplant.  Wow, to have such power over a room!  Gary was disappointed that he couldn't be here, but I'm glad he wasn't, we'd never hear the end of that.
I posted some photos taken today.    This morning before I left home I grabbed my big blue Victorino finger.  I figure the day Derek got me the foam finger, I wore it proudly, waving it around and Victorino hit a home run.  Hopefully this transplant is a home run too.

Tuesday, May 18, 2010

Here we are back at Hershey Medical Center, ready for transplant #2.  Keeping all of our fingers and toes crossed that this one engrafts. This place is feeling too much like home.  After talking to a friend, I feel as though I should clarify that Karen Musser is not Casey's donor.  She signed up at the bone marrow drive they had for Casey in October, and was a match for a lady who she never met.  Casey's donor is a young man who we never met.  Thank you to everyone who have been tested.
Casey had a good week.  His friend Barry was here from Seattle, so Casey got to spend Sunday afternoon with him.  In the past couple of months he had a friend from Nashville, Chapel Hill and Seattle come to visit, but on Sunday a friend is coming from Bangcock Thailand.  She gets the prize for the most miles!  We haven't seen her in several years and will have a lot of catching up to do.


Tuesday, May 11, 2010

What a great weekend.  Casey took his swimmers on a 3 mile hike on Saturday, and then back to his house for a picnic.  Good thing he had his mom, and some of the other moms to do the cooking (thanks Nancy and Adrienne).  Those kids wore him out.  Back at his house he needed to sit in his recliner while the kids were running around, climbing trees, and laughing at Kyle's dog who fell in love with Emily.
Then on Sunday we were off to the Phillies game.  It was cold outside, but the Phillies bats were hot.  My nephew bought me a big foam Victorino finger so I could really get into the game (and keep my hand warm)!  Victorino hit a home run with me waving my big blue foam hand.  I feel personally responsible for that home run.  It was the best mother's day ever. 
Tomorrow chemo starts in preparation for the next transplant.  What would be day 100 of his transplant (which is a huge milestone) will be day #1.  We are ready to get started.  His chemo this time around will not be nearly as heavy as the last time because they are not killing cancer, just a few cells.  His doctor says compared to what he has already gone through, this should be a walk in the park.  I suppose he figured the hike on Saturday was his training for that walk. 

Wednesday, May 5, 2010

Happy Cinco de Mayo everyone.  Not much to tell these days, things have pretty much been holding steady.  Casey's white blood count has not changed from .2 for several weeks.  He has been sneaking out to coach outdoor dry land practices twice a week.  It makes him feel so much better to be around his swimmers.  I guess he figures he has harrassed me enough and needs to find new people to pick on.  On Friday he has an appointment with his oncologist and a week from today he starts chemo to get ready for transplant #2.
So much to celebrate this week, Casey's birthday, Cinco de Mayo, Mother's day, kids coming home and/or graduating from college.  Enjoy your week and revel in the fantastic spring weather.

Monday, May 3, 2010

Casey is 28 today and got his bald photo taken for his driver's license.  Thank you for all of the birthday cards and wishes sent Casey's way today. 
We spent the weekend at the beach and had a great time.  Casey has to be extremely careful not to get sunburn. Rather than being beach bums we took the dogs to Cape Henelopen State park and for rides on the golf cart.  We were actually able to tire them out.  The rest of us were tired too.  Casey has a bad case of spring fever, and is ready to bust out.  Three months of being cooped up were not so bad when it was cold and miserable outside.  He is looking forward to having another transplant!  I know he misses all of you, and Quodoba burritos!

Tuesday, April 27, 2010

Attached is a photo of Karen Musser donating her stem cells.

Thank you Karen!!

Monday, April 26, 2010

A plan is in place.  May 12th Casey starts chemo with the transplant happening on May 19th.  Casey and Stevie got a ticket for me to join them at the Phillies game on Mother's Day.  I am looking really looking forward to spending the day with my kids... and then it's down to business!
Several months ago, we got a letter from a woman who we never met.   She took the time to write a 2 page letter about her son who has a similar story to Casey's.  His cancer was put into remission, only to return so they decided a transplant was the route they needed to go.  None of his siblings were a match, nor could they find anyone on the national registry.  They transplanted him with his own stem cells...which didn't work.  The next step was a transplant from a young man.  That was six years ago and he is doing great.  I can't tell you how many times I have read that letter.  Sound familiar?  All your letters, notes and acts of kindness have a huge impact, just like this lady, I am sure you will never realize how important they are to us.  Casey is terrible with thank you cards, believe me I try.  I think it's a boy thing.

Sunday, April 25, 2010

Casey's appointment on Friday went well. The nurses baked him a red velvet cake for his anniversary and upcoming birthday.  His white blood count is at .2, so things are not growing in there.  It is amazing that he is doing so well with no cells. 
He was at his house yesterday afternoon and Kyle came over with his dog.  I stopped by with my dogs, and the three of them had a great time.  They were running and playing non-stop.  I thought it might tire my girls such luck.  I wonder if  they are related to Emily Cameron.
So for now, we just keep hoping and praying all goes well with the donor's physical, and living as normal a life as possible while staying germ free.

Wednesday, April 21, 2010

April 21, 2010.  Today marks the 4 year anniversary of Casey's diagnosis of acute lymphocytic leukemia.  I will never forget that day.  I went to the hospital thinking I was bringing Casey home with a severe case of mono, when the doctor told me to have a seat.  I can picture Casey's face being very stoic, while his legs were twitching.  Gary getting up in the middle of the night to go into the hospital, because he felt so helpless.  And waiting until the following morning to call Stevie so that she could enjoy her formal that evening.  It seems like yesterday.  What a learning experience it has been.  I first learned how to spell leukemia so I could google.  I learned about central lines, blood counts, neutrophils, methotrexate, graft vs host, but mostly I learned that I have an incredible son.  Never once during this ordeal have I heard him ask why....only what do I have to do next to get over this hurdle.  He worries that his vomitting in the middle of the night wakes me. He has passed out on the bathroom floor, when he came to, he said he was sorry. Once I had to leave work to take him to the hospital because he had a fever and by the time we got there he was too weak to walk, but he wanted me to finish out my day.  These are just a few examples of times he has apologized to me for being an inconvenience.
Some good has definitely come out of this.  This experience has brought Stevie and Casey real close together.  Growing up they fought all the time.  Now Stevie is the one who takes him for most of his treatments, and runs his errands.  Mrs. Musser is donating her stem cells to a 43 year old person she never met.  And I got a great pedicure!
Another thing I learned is how wonderful family and friends are.  Thank you for all of your thoughts, prayers and continued support.
One last thing, I have never for felt inconvenienced by any of this.  What I have felt is proud to be Casey Coble's mother.  I love you Casey!

Friday, April 16, 2010

Casey just got finished with his appointment with his oncologist, and it is definite that they are going ahead with another transplant.  They have located a donor who is a 19 year old male and it sounds like he is fairly local.  He is an 8 out of 10 match.  He will have to have a physical and then things are full speed ahead.  The estimated timetable is 3-4 weeks.  This time around Casey is only looking at staying in the hospital a couple of days.  We are told this is a whole different ballgame.  All of the prep work is done.  He will only have to have some small doses of chemo.  Dr. Ehmann is really quite amazed that Casey is at day 66 today, with no immune system, and has been able to stay as healthy as he has (knock on wood).  He also told Casey he may go to the Phillies game on Sunday and have 1 beer.  He said he would like to keep him in a bubble, but knows how important it is for patients to lead a somewhat normal life.  He said take hand sanitizer, sunscreen, wear a hat and enjoy your day.  You gotta love Dr. Ehmann!
(p.s. my salon is Salon Art Tiff in Ephrata)

Wednesday, April 14, 2010

Casey has been trying to bribe his baby girl stem cells with shoe shopping, but they are not responding.  His white blood count was .3 today (normal is 5.-10.). We are anxious to hear what Dr. Ehmann says on Friday.
April 21st will mark the 4 year anniversary of Casey's diagnosis.  On April 20th, my salon is having a relay for life fundraiser, so in Casey's honor I have made an appointment for a pedicure.  I am feeling pretty good about doing my part for the American Cancer Society. 
Casey's birthday is May 3rd.  Four years ago he had his photo taken for his driver's license and was bald as a cue ball.  He was looking forward to having his photo taken with hair this time around.  He got his camera card in the mail to have his photo taken again, and once again he is bald as a cue ball.  Oh well, with Coble genes he better get used to no hair.
This week I got some really nice surprises.  Very thoughtful cards and even a chicken dinner.  Thank you so much to everyone for your continued support.  With the help of our faith and friends, we really are doing okay.

Saturday, April 10, 2010

Casey was released from the hospital today.  He was greeted at home by 2 excited puppies.  Eating is going well for him.  He has photos of the inside of his intestines which I think I'll have framed for his birthday.  Bet he doesn't get two of those.  Casey will go to the cancer clinic on Monday and Wednesday for check-ups, and then to see Dr. Ehmann on Friday.  Meanwhile we will talk to these baby girl cells and try to get them to cooperate.  Prayers help too!

Friday, April 9, 2010

Casey's scope went well today.  He got good news and not so good news.  The results showed irritation, which with no food things should heal.  They gave him food to eat today, which he ate with no problems (other than hospital food is not all that tasty).  They also did a bone marrow biopsy to try to figure out what is going on with his new cells.  Upon looking at them, they did not see any sign of leukemia (great), but the new cells are not growing.  They are thinking of doing another transplant.  This one would not be as invasive because he would not have to go through all of the chemo to kill his cells, because he doesn't have any.  They would transplant him with adult cells, going with a donor who was not a great match.  For some reason they can get away with that this time.  Casey has an appointment with his doctor on Friday, at which time they will determine if this is the direction they want to go.  I asked Casey how he feels about that.  He'll do whatever he has to do to get back on the pool deck and back to his regular life as fast as possible.  He has commented several times on how good of a time he had last week.

Thursday, April 8, 2010

Casey had his gall bladder scan today and everything looks good.  Tomorrow they are going to do the scope, they will start loading him up on platelets tonight and tomorrow.  The anesthesiologist was just in here to have him sign some paperwork and talk about the happy juice they will give him.  Casey seems excited. 
Last night I was getting ready to call it an early night and leave around 8:15 when my dad called to say my mother was in a car accident and was being taken to Lancaster General by ambulance.  So I left Hershey Medical and went to Lancaster General.  My mom is okay, just very sore and badly bruised.  She totaled the car and is feeling terrible that she had to cancel her appointment to get her hair and nails done today.  Now you know where Stevie gets it.  I gotta tell you, I can't remember the last time I was bored.

Wednesday, April 7, 2010

Casey continues to feel even better today.  It's hard to tell what might happen when he starts to eat again.  They are hoping to do the scope, are going to do a gall bladder test and a bone marrow biopsy.  The liquid nutrients they are giving him are making his sugar high (330), so they have been giving him shots of insulin.  At least he is not in pain anymore.  We escaped and sat outside for a bit tonight, what a nice evening.  We had to hurry back in the Phillies started playing at 7:00.  I am a channel surfer during the games, but Casey can watch the Phillies for hours on end.  I will probably leave early tonight, because he has Shane, Chase, and Cole to keep him company tonight.

Tuesday, April 6, 2010

Casey is feeling much better today.  They have put him on steroids and are not letting him eat.  Casey gets real hungry when he is on steroids, and no food for 2 days makes him real hungry!  They have now hooked up his bag of food (TPN).  Mom's cooking will look pretty good after this week.  They would like to look inside of him with a scope to find out what they are dealing with, but his white blood count is .3 which puts him at a serious risk of infection, and his platelets are low which puts him at a risk of bleeding.  So we just wait, and try to avoid the Domino's commercials on tv.

Monday, April 5, 2010

Casey had a great visit with his friend Griff.  On Friday, Kyle came over and they enjoyed the nice weather and a visiting nurse came to see him.  When she left, Casey and I took a 1 mile walk around Grubb lake, and on Saturday we went to the Phillies game.  He had a great time, he said he felt like he was on vacation.  Saturday afternoon Casey started to feel really bad, with nausea and cramping.  He tried to make Easter dinner yesterday, but was too uncomfortable.  Today when he went up for his visit, they kept him.  He is back as a patient at Hershey Medical Center.  A ct scan revealed a large intestinal bubble, so they have taken him off of all food and are feeding him through his IV.  They feel as though this is graft vs host disease, where the body is trying to fight off the new cells.  They are able to give him so heavy duty pain medicine to help keep in comfortable.  Boy, what a difference 2 days can make!

Friday, April 2, 2010

On Wednesday night Casey's friend, Griff, came up from North Carolina to spend a couple of days with him.  They had dinner at our house, and then went to Casey's house.  Griff has a real interesting background.  His parents were at woodstock and his mother was a very active at Kent State during the riots.  His father is a retired tenured art professor at William and Mary.  I love Griff's parents (and Griff).  Paul and Caroline (Griff's parents) fell in love with the Chapel Hill area while Griff was at UNC and upon Paul's retirement they relocated there.  Caroline was one of the first people to call me when Casey's leukemia relapsed. They are a very kind family, and I miss seeing them.  Griff grew up in Williamsburg with Big Bob's kids.  They carpooled to swim practice together.  Yesterday, Griff took Casey up to Hershey for his clinic visit.  Casey called Big Bob and told him to come over, he had a surprise for him.  I wish I could have seen Big Bob's face when he saw Griff. Casey said he called his wife and daughter and had them come down.  It was a regular reunion in the cancer center!  Casey and Griff played some pitch and putt in the afternoon.  Unfortunately, Casey was only good for 9 holes yesterday.  His white blood count was down to .2 yesterday and he hasn't been able to eat all week.  Last night I cooked dinner for everyone at Casey's house and Casey ate a full meal.  Hopefully that is a sign that things are turning around.  I think Griff's visit was just what the doctor ordered.
Happy Easter to everyone!

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 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 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.

Sunday, February 28, 2010

Day +20.  Casey is feeling a little better today, but really tired and light headed.  His counts continue to climb.  He was able to eat a popsicle, which is the most he has eaten for several days.  He is napping while watching the USA vs Canada hockey game.  His Canadian nurse just came in...she is not cheering for team USA (but she is a cute blonde).  What will he do tomorrow when the olympics are over?  Maybe he will have to start watching Judge Judy.

Saturday, February 27, 2010

Day +19.  Casey's counts continue to climb, but he is having intestinal problems today.  They took some cultures to check for C diff.  He does not have a fever.  It could be GVH, but we will have to wait and see.  Meanwhile he is just getting a bit frustrated at taking a step back. We have the olympics and ACC swimming championships to watch.  I do miss those swim meets.  Today I got a nice card in the mail with a Starbucks gift card.  The card was not signed, so I don't know where it came from.  Whoever sent that to me, Thank you!  I will put it to good use.  Starbucks is usually my dinner.  It is too hard to try to eat with a mask on, but I can drink latte through a straw.

Friday, February 26, 2010

Day +18.  Casey is doing great today.  He white blood count went up to .6 today.  3 days in a row .5 and higher.  I'm feeling real good about the way things are progressing.  We need to get him out of here so he can do his income taxes!  Yesterday he got a card from friends at church.  Somehow they got it signed by a lot of the church members and currently we don't even have a church.  The building burned so we are a nomad congregation, traveling to different churches for services.  It just proves a church is so much more than a building.  Thank you to everyone.  Taxes, burned churches and leukemia are just some of the nuisances we are looking to move beyond.

Thursday, February 25, 2010

Day +17.  I have to post early tonight so Casey can watch the ACC championships on his computer.  His college coach, who in now retired will be commentating.  That should be interesting.  It will be great to hear Frank Comfort's voice again.  Casey continues to get stronger every day (but not fast enough for him).

Wednesday, February 24, 2010

Day +16.  Casey's white blood count is up to 0.5 today and the bloody spots on his eyes are just about all cleared up.  Things are moving in the right direction.  Normal range is 5 -10, so he still has a way to go.  He needed another infusion of platelets today.  I am told the platelets are the last thing to recover.  Sometimes it can take months before your body makes enough of platelets on their own.  We will be making daily trips up here after he gets discharged to have his counts checked.  For those of you who don't know, leukemia is a cancer in your blood, which is why they pay such close attention to his counts.  Hopefully this is a sign that the his new cells are engrafting!
Meanwhile, I will get ready for another Pennsylvania blizzard.  What is going on with the weather this year?  February 2010 will definitely go down as one of the most memorable months of my life.

Tuesday, February 23, 2010

Day +15.  Casey is having a good day.  His computer is fixed, his white blood count is up to .3, and he was able to eat some yogurt and applesauce.  His platelets and red blood count were real low, so he was transfused with both of them today.  We did 5 laps around the nurses station tonight.  He is talking about going home in a week.  I'm not sure what the doctors say about that, but it is good for him to think of positive things.  His counts have a long way to go, but we are on the upside now.  Yeah!  The mucositis in his throat had him snoring like a freight train (or his Uncle Dale, depending on who you talk to).  I think he was waking himself up.  That has even subsided a bit.  The first 30 days after the transplant are the most critical, and we are half way there.
Whoever put the Starbucks in this hospital is my hero.... A wine bar would make the drive home too difficult.

Monday, February 22, 2010

Day +14.  Casey is actually feeling a little better today.  His white blood count went up to .2, so it is still nothing to get excited about.  Hopefully it is a sign of the stem cells engrafting.  He has developed a rash, but that is to be expected.  His body is going through a transition of the new cells taking over and your body sees something foreign and tries to fight off.  That is what they call graft vs. host disease (or GVH).  I am told you need to go through a bit of GVH so your immune system does not reject the new cells.
Meanwhile we are just hanging out, doing daily laps, and looking forward to spring.

Sunday, February 21, 2010

Day +13.  Casey's counts are still as low as they can go, and he is feeling a little antsy.  Last night he took a sleeping pill which knocked him for a loop all day today.  His computer got a virus (the same one our home computer had 2 weeks ago, so I guess it is back to the computer guy).  I really don't understand people who get a kick out of sending these viruses out.   Casey has been in the hospital 3 weeks now and I think the walls are closing in on him.  Today he said he is disappointed that some of the snow is starting to melt and he didn't have an opportunity to see it at it's height.  I say lucky him.  His dad cleared the snow from his house, I'm sure he is not disappointed he missed doing that job.  His main concern is writing practices without his computer.  He is worried about his swimmers coming into championship season.  I am sure we will be able to get him set-up with another computer and his swimmers will continue to make him proud.  If I had to choose between a computer virus and a colonoscopy, I would take the virus.

Saturday, February 20, 2010

Day +12.  Casey's counts are still at the bottom of the barrel, but he seems to be feeling a little better today.  Big Bob pulled a good one on Casey today.  Big Bob's wife is a gastroentorologist here at the hospital.  When Dr. Ehmann checked on Casey today he asked about his stomach and bowels (which is typical doctor talk around here).  A few hours later a doctor from gastroenterology came in and said to Casey, "I hear you have been having some stomach issues, so I am here give you a colonoscopy."  Gary said Casey's eyes got big for about a second, and then immediately realized Big Bob was behind it.  Bob's wife stuck her head in the door and Gary and Bob got hysterical.  I seem to miss all of the good stuff.  Gary and Casey are still laughing about it.
Annie and Bowie skyped Casey today.  They were really excited to see him again.  Annie was twisting and turning her head and Bowie was real intent on what was going on.  So I would say today was a pretty good one.
Til Tomorrow,

Friday, February 19, 2010

Day +11.  Not much has changed since yesterday.  Casey's counts are as low as they can get.  He got 2 bags of red blood today and his throat is still sore.  They told us the cord transplants take longer to engraft than the traditional transplants.  Last night while Casey was doing his laps, we met up with another patient who was asking him about his disease.  Casey told her his story about how he had to go through 2 years of chemo 3 years ago and now his disease came back and now he had a transplant.  She looked at her chemo and at Casey and said "I can't believe you had to go through this for that many years."  It kind of put it into perspective to me.  Because Casey does not complain much, he just focuses on the end results, I sometimes don't give him as much credit as I should.  This is a tough road he is traveling for the second time around, with a few more twists and turns along the way.  But he is handling it like a NASCAR driver, looking for the checkered flag.

Thursday, February 18, 2010

Day +10.  Casey is much more comfortable today.  They increased his morphine, but he also gets sleepy.  Big Bob took him for his laps today.  He completed them, but his pace was slow.  Yesterday he got red blood and today he got some more platelets.  His counts continue to fall, but at least he is not in as much pain as he was the past couple of days.  Let's hope those new guys take hold and grow soon.  Meanwhile I will work on teaching Annie and Bowie how to skype so they can talk to him during the day.

Wednesday, February 17, 2010

Day +9.  Casey's mucositis is also in his esophagus, they have him on a morphine pump to help manage the pain.  He can hit the button every 10 minutes.  He sleeps a lot, when he is able. They did warn us that this would be a rough time. Now we just wait for the new cells to engraft and take over.  Too bad the olympics aren't on 24 hours.  I'm not sure if he is up to doing his laps tonight, we'll see.  
He is very proud of the job his swimmers did at leagues.  He had people reporting in to him.  You guys made him smile.  Way to go LAC, you kids continue to be an inspiration to him.

Tuesday, February 16, 2010

Day +8 has been a bit of a pain in the neck.  Casey's mucositis has moved into his throat.  He has a rinse to swish in his mouth to help alleviate the pain, but he doesn't swallow it, so it is no good on his throat.  They give him shots of pain medication to help him cope.  I was trying to call him today, but he wouldn't answer because he was knocked out from the pain medication.  I called in the troops to find out what was going on.   I called Stevie and Big Bob, but they hadn't seen him yet, I called Aunt Debbie.  She left her basement lab and went to his room on the 6th floor and reported in to me.  Thank goodness for Aunt Debbie.  Casey was annoyed with me, and I bet it won't be the last time.  He just doesn't understand when mommy mode kicks into high gear.  Casey got infused with some platelets today too, so he has been busy.
I got a request for Casey's address, so here it is
 Penn State Hershey Medical Center
Casey Coble, Room 6125
500 University Drive
Hershey, PA  17033
Thank you for your continued support.

Monday, February 15, 2010

Day +7.  Today is one week since Casey received his transplant and all is well.  He has developed mucositis, which is gives him sores in his mouth.  It makes it hard for him to eat, not that he has much of an appetite to begin with.  Big Bob brings ice cream bars in for him every day.  He has no problem eating them.  Isn't it amazing, no matter how bad you feel, ice cream always tastes good.  I hope you enjoyed the photos I posted of his transplant.  Casey's white blood count is 0.1 which is as low as it goes.  They gave him a shot of neupogen tonight which will boost the growth of his cells, but it will take a few days to take hold.  From here on out it is all new cells taking over.

Sunday, February 14, 2010

Day +6.  Casey has upped his laps to 3 around the nurses station, so things are going well.  He is having a real good day.  He was able to eat half of his lunch today.  He does have sores inside of his mouth, which is common, but they are not too bad.  It is more his stomach that has held him back from being able to eat.  Casey had some broken vessels in his eyes from throwing up all of the time, and they too seem to be getting smaller.  The swelling in his face has gone down, and his hair is still growing.  In the past it has taken a couple of weeks for his hair to fall out after chemo.  He needs to shave and I forgot to bring in his electric shaver.  His platelets are real low, (the platelets are what causes your blood to clot), so he is not allowed to use a razor. Casey got a small dose of methotrexate (which is a chemo drug), but after what he has already gotten, that's like you and me taking a baby aspirin.  Today has been a great day.  I hope you are having a great day too.  Happy Valentine's Day.

Saturday, February 13, 2010

Day +5.  Casey is feeling tired and a bit nauseous today.  I think the reason he is feeling so crappy is because he found out the cord blood came from a different place than we were originally told.  Originally we thought both were coming from Germany, then were told one was from Germany and one was from France.  The day of the transplant we found out actually one came from the United States and one came from France.  One has a blood type of A+ the other one is O+.  We are not sure which one is from France and which one is from the USA (we'll see if we can find out), but only one will take over his body, and his blood type will be the one that won out.  Last night we found out the one from the US came from the Carolina Cord Blood Bank.  I saw the blood as it was going into him, and it wasn't Carolina Blue!  I googled the Carolina Blood Bank to see where it is from, and it is from DUKE.  For those of you who don't know, Casey is a UNC alumni, and Duke is their biggest rival.  At orientation they teach the in coming freshman, from now on you spell Duke "D.O.O.K." and you spell North Carolina State "H.I.C.K.".  As I kept reading the Carolina Cord Blood Bank's information, it said they collect umbilical cords from Duke, UNC, NC State's hospital and Wake Forest's hospitals.  No matter where the blood comes from, Casey will always have Carolina Blue Blood.  Way to go Heels for winning tonight!

Friday, February 12, 2010

Day +4.  Casey seems to be a bit better today.  He got out of bed and went for a little walk tonight (2 laps around the nurses station).  Last night his friend called to try to make him feel better by telling Casey, he threw up yesterday.  Way to take one for the team Eric, it seems to be working, it definitely lifted his spirits.  His numbers continue to drop.  Monday they should bottom out, and then start the recovery process.  That is if Casey does what is normal.  We'll see, Casey has always been a little weird.  I wonder where that comes from?  Maybe he's spending too much time with Big Bob.
Til Tomorrow,

Thursday, February 11, 2010

Day +3.  I got out of the house and am up with Casey.  He is having some stomach issues and is tired, pretty much the same as it has been the past few days.  I asked him if he is bored, and he says no.  He is not feeling well enough to want to do anything other than lay around.  But after what he has been through, I think he is doing great.  Last night our church caught on fire.  It is sad.  I got baptized there, confirmed, married, had my children baptized and confirmed there and my grandparents funerals were there.  But like Casey, I know it will come back stronger and better.  There are just going to be some bumps in the road along the way.

Wednesday, February 10, 2010

Day +2.  We have been hit with a blizzard and have not been able to leave our house today, so I was not able to do the 45 minute drive to Hershey Medical Center.  I spoke to Casey and he says he feels fine, just wiped out.  I sure hope I can get up there tomorrow.  I know he would not tell me if he was not feeling well.  I have a feeling he will be feeling bad later tonight after the Duke/Carolina game.  His tar heels have not been having their best year.  But who knows, it always seems to be an interesting game.  We'll keep digging out.

Tuesday, February 9, 2010

Day +1.  Casey feels okay, just tired.  This is to be expected.  Another snowy day in PA and I will have to cut my visit short tonight.  I think Casey will be fine just laying in bed watching television and doing some sodoku puzzles that the Eckman's gave to him.  Thank you!  Casey's counts are starting to bottom out.  When his counts start coming up, that will be the new stuff taking over, but that won't happen for several days.  In the meantime, we wait and pray, and be thankful for all of the support from friends, family and our swimming family.

Monday, February 8, 2010

Day 0.  The transplant is finished and all went well.  Casey feels fine, only a little tired.  We were in the room with him while they did the transplant.  I took photos and will post them when I get my home computer fixed.  I got a virus and it has been acting up ever since, but I have been a bit busy to try to get these little chores done.  Not that I have really been doing anything other than hanging out with Casey.  It just makes me feel better to be with him.  They brought the stem cells in the room in what looked like a garbage can filled with dried ice.  Then they put it into a warm water bath to thaw it out and Dr. Ehmann injected it into him through a giant syringe.  There were 2 people here from the transplant team, Dr. Ehmann and a chemo nurse.  It was really quite uneventful, which was fine by me.  The equipment was the most impressive.  They said the stem cells have already gone into his bone marrow.  So now we wait for them to take over and for his counts to recover.
Tomorrow is Stevie's birthday, so we had a little birthday celebration because we were all together.  That is a rare thing these days.  Tomorrow we start counting up, and they are expecting to see his new stem cells take over around day 14, but everyone is a little different.  As for the odor coming out of Casey, I would not say it smells like garlic.  I'm not sure how I would describe it.  Hopefully it is the smell of sweet success.

Sunday, February 7, 2010

Day -1 is a good day.  Casey if feeling much better.  He is watching Larry the Cable Guy.  It's' good to hear him laugh again.  It's hard not to laugh at Larry the Cable Guy.  The nurses put out a Super Bowl buffet and Casey ate half a hot dog with sauerkraut.  We are looking forward to the game, but will miss our usual gang who we watch the game with.  One or our annual questions is What is the first commercial after kick-off?  I say Miller Lite, Casey says Boost Mobile.  What do you think? 
Casey is prepping for his big day tomorrow.  The transplant should take place around 11:30 a.m.  We are ready!
Next time I check in Casey will have received his "new life".

Saturday, February 6, 2010

Day -2 is better than yesterday, but still not great.  He is still having headaches and feeling tired and weak.  They have been able to stay on top of the nausea, so he is able to sleep a lot.   Casey will do anything to get his dad to shovel out his driveway.  They say this is all to be expected, the type and strength of this chemo is wicked.  The bright side is tomorrow is what they call a day of rest.  No chemo.  Just football.
Thank you for all of your well wishes and prayers.
Till Tomorrow,

Friday, February 5, 2010

Day -3 is not a good day.  Casey is feeling really bad.  His face is swollen, his head and jaw ache and he is nauseous.  He stops throwing up long enough to let out a few curse words.   Thank goodness this room is pretty sound proof!  They gave him morphine for the pain.  It would be nice if he could just sleep.  He is saying this really sucks.  Can't say as though I disagree.  He just said if I want to try this he will teach me how.  You know if I could, I would do it for him.  They are telling us this will last for about 24 hours.  Tomorrow they will try giving him this medicine at a slower pace along with benadryl, to hopefully avoid him getting this sick again.
Looking forward to a better day tomorrow.

Thursday, February 4, 2010

Today is Day -4.  We are getting closer to the transplant date of Monday, February 8th.  Casey's doctor was telling him that after the transplant he will exhale a garlic odor, which will encompass the whole room.  We will probably have all the hospital staff stopping in looking for pizza!  It has something to do with the preservative that is put into the stem cells.  Kyle said that is the real reason we are all going to have to wear masks.
Casey's appetite has diminished, but in the previous weeks he ate really well, so he has enough of weight to carry him through.  He really enjoyed being a regular person for the last couple of weeks, but know it is time to get back to being a cancer patient and getting this disease out of his body.

Wednesday, February 3, 2010

Day -5 and the chemo is making Casey feel pretty bad.  At least it is not constant, it comes in waves.  Tomorrow at this time he will be finished with this drug and then on to the next one. Stevie's friend Betsy, from high school is a med student here, she stopped in the other evening to visit.  It was great to see her.  It is nice to see these kids all grown up. 
The puppies enjoyed their first day at day care and have been welcomed back again.  They told us it would tire them out.  Fat chance.  They might have been tired for 2 minutes and then it snowed!  They do have a good time in the snow.  How do they still manage to come in with mud on their feet?
Thank you all for your continued support.

Tuesday, February 2, 2010

Casey's Story

    This is Stevie (Casey's sister)! We have picked up a lot of followers on our journey.  Some are familiar and some aren't with Casey's story.  I wanted to talk about his story so everyone can have a little more of an understanding about my brother. 
    Casey was born on May 3, 1982 (don't worry, I'm not starting that long ago!).  His fighter and perseverance attitude was shown as he grew up to become an Olympic Trial qualifier in the summer after his graduation from Ephrata High School, in the year 2000.  He then pursued his swimming career at the University of North Carolina.  After 5 years in the wonderful town of Chapel Hill, he graduated with a Geography degree.  Casey then started as an assistant coach at the Lancaster Aquatic Club, where he swam growing up. 
    Almost a year after graduation from college, he had mono-like symptoms.  Since Casey was such a great athlete, he learned how to read his body.  He knew something just was not right.  They continued to take several blood tests and were sure he had a severe case of mono, but wanted to do Leukemia, Lymphoma, Hodgkins Disease, etc tests.  The tests showed Casey had Acute Lymphoblastic Leuekemia and was diagnosed on April 21, 2006.  He began chemotherapy immediately.  They had found the cancer early and didn't need a bone marrow transplant because they were sure chemotherapy would be the solution.  It looked this way.  After the first phase, his body was cancer free.  He then needed to continue chemo in the maintenance and preventative phases until April 15, 2008. 
  Casey continued coaching at LAC and I began to work right beside him.  He then was offered the head coaching position in July of 2008 and was now my boss! He continued to mentor me and teach me as we worked side by side.  In August, 2009, he was at Junior Nationals in Seattle, and he knew something was going on.  By the end of August his symptoms have not subsided and still felt anemic and that his spleen was enlarged.  He then got ahold of his doctor and made an appointment.  That Monday of the week, we lost our wonderful dog, Sage to a battle with cancer.  We knew the week held something.  On Thursday, September 3, 2009, Casey and I went to Hershey to meet with Dr. Ehmann.  My mom sent me because she thought she was bad luck since she was with him the first time.  Casey was once again very in-tune to his body.  They found the cancer VERY early and it was once again, ALL.  They had swept me right up to the blood lab to take some blood to see if I was a match for a bone marrow transplant.  The doctors explained even though it is very early, like last time, it is standard to do a transplant when it relapses.  We had a weekend at the cabin planned with our close friends.  The doctors agreed to starting the chemo that next Monday so we could have that weekend together.  We made the best of it!!  That Monday he began Chemo.  That is when my mom began this blog!
    While we were growing up, I was the annoying little sister.  I admired Casey for what he accomplished and was so proud of him.  I was always the loudest cheering for Casey in the stands and never wanted to miss a meet.  I wanted everyone to know that the fast guy was my brother! When he went off to college, I became a HUGE Tar Heel fan as well.  We then became friends instead of just brother and sister.  There were times I would get calls in college to make sure I was making the right decisions.  He often would be with his best friend, Kyle who had the same advice. 
     When he got sick, the first time, I was only a sophomore in college so I was not at home for the most of the time.   This time around, I am right here the whole way.  Casey is truly and inspiration to all of us.  His spirits are extremely high and he makes it easier on everyone around him.  He never complains about what he has to do, he just does it.  If you read this because you have had a loved one go through a similar process or a friend is a friend of family member of Casey, I truly hope you get to meet him one day because he is a very special person.  Once again, I will be loud cheering him on and am so extremely proud to be his sister. 

God Bless all of you! The support from our family, friends, and swimmers have been overwhelming.  Our family is so fortunate to have you all and words cannot express our appreciation of each and everyone of you.

Love you and Thank you!

Monday, February 1, 2010

The official count down has begun, today we are at day -7.  Casey has had a full day of chemo and is doing great.  He's all moved into his room with his poster of  his swimmers keeping an eye on him.  (Don't worry, he's keeping an eye on you too, Stevie reports in).  In celebration of ground hog day I going to try to talk him into taking a wheelchair outside tomorrow morning to see if he see's his shadow.  He could be the new Puxatauny Phil.  His hair started coming back in, it's fuzzy like a ground hog's.   The odd thing is through his first time around with the chemo 3 years ago his hair grew back in brown, this time it is growing back in blonde.  It will be interesting to see what color it is after the transplant. 
Thank you for all of your well wishes.  I will keep you posted.

Sunday, January 31, 2010

We're here at Hershey Med getting ready for the big procedure.  I'm thrilled to hear that Deb got a call from the bone marrow registry and may be able to help save somebody's life.  What a great thing!
Casey's friend Matt Horning is a 5th grade teacher at Adamstown Elementary school.  Matt's students made cards for Casey, we were reading them and they made us smile and chuckle.  Thank you to Matt and his students.  That was a very touching thing to do.
Casey's swimmers made him a beautiful poster with all of their photos on it.  We had our hands full of stuff today, but the poster will certainly be in his room tomorrow.  He will have all you with him through the process.
Thank you to everyone for your ongoing support as we embark on this new adventure.

Wednesday, January 27, 2010

Final preparations are being made for Casey's hibernation at Hershey Medical Center.  Friday morning he will have a new central line put in.  A central line is a port for dispensing his medicine intravenously.  They put tubes into his veins under his skin and through the outside on his chest.  So rather than having to stick him with needles constantly, they administer his chemo through the outside opeings of his port.  They wanted to use a different one than the one he had in before, so he has gone 2 weeks with no tubes hanging out of his chest.  His cats thought the tubes were toys the way they dangled and would swat at them while he was trying to sleep.  They also make taking a shower a bit of a challange.  We have to tape up the tubes and seal the openings on his chest with plastic covers.  Casey was not able to take daily showers, so he may not have smelled the best, but at least his hair was never a mess.  His hair is starting to come back in.  He has a 5:00 shadow on his head.  I have also enrolled the puppies (Annie and Bowie) into Doggie Day Care.  That place has no idea what they are getting into.  Every day at 1:00 they have nap time, where they dim the lights and put a movie in for them to watch for an hour.  Other times of the day they have sofas to sit on and friends to socialize with.  Casey, Annie and Bowie have gotten so attached, it is going to be hard for them to be apart for a month.  I have a feeling Casey will be calling them on the phone.  I know I would never get away with trying to convince the staff they are therapy dogs.  They love life and are happy to see everyone.  Let's pray everything goes smooth and easy, so Annie and Bowie can have their Casey home with them fast.

Tuesday, January 19, 2010

We have a date!  Casey will be admitted into the hospital on January 31st to start his chemo, with the transplant taking place on February 8th.  They are having 2 cords shipped, one is from Germany and the second one is coming from France.  I'm really not sure what the outcome of this will be.  Will he want brie with his wiener schnitzel?  Can anyone picture Casey wearing a beret?  This week is some kind of French holiday, so the cord will not be shipped until next week.  They will not start him on chemo until they have the cords in house, so we have to hope they both arrive in a timely manner.  They won't put him through the intense chemo without knowing for sure that everything is in place a ready to go. 

Friday, January 15, 2010

We had a good day yesterday.  All signs point to Casey being healthy enough for the transplant.  The labs will be done more in depth, but from initial readings it all looks good.  They will have the cord blood shipped.  It is coming from Germany.  When it gets here they will set the schedule.  Casey will probably crave brauts and wiener schnitzel after the transplant, which is ok...If he starts wearing leaderhosen I will get a bit concerned!  Today they will remove his central line and they will replace it with a different one for the transplant after he is admitted to the hospital.  He is anxious to not have tubes hanging out of his chest for a week.   So once again we are waiting for a phone call saying it is time to come in.  We are thinking late next week.  The first week will be intense chemo, followed by the transplant and 3 weeks of hospital recovery and then daily visits to the hospital.

Tuesday, January 12, 2010

On Thursday, Casey has a day full of tests to make sure he is ready for the transplant.  First stop is with his doctor, who will go over the transplant in detail with us, telling us what to expect.  He will then have another bone marrow biopsy, an echocardiogram and a pulminary test to make sure his heart and lungs are in good enough shape to withstand the procedure. I have a feeling we will come away with a lot of questions, so we have Aunt Debbie going with us as an extra set of ears, and her well educated mind.  I have not been able to read the literature they gave me.  I start getting a bit freaked, and put it to the side, but Dr. Ehmann has a calming way of conveying information.  Hopefully we will get back from the hospital in time on Thursday for me to be able to post more information.

Tuesday, January 5, 2010

Casey was at the hospital yesterday to get a seasonal and an H1N1 vaccination.  They also took about a gallon of blood from him (give or take a few quarts) and are testing him for just about everything, to make sure he is ready for the transplant.  Dr. Ehmann is on vacation this week, but Janet who is his nurse was filling Casey in on some details. Next week we will have a consultation to get all of the information and to prepare us for what is to come.  They have reserved the umbilical cords that are compatible for Casey's transplant (I am not sure what part of the world they are in at this point - but thank you to whoever had the knowledge and compassion to donate them to  I am anxious to get to the next step, but am very thankful that his doctor's are taking their time to make sure he has the best situation for the safest outcome.
Please keep those prayers coming!