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 out...no 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!