Tuesday, May 28, 2013

At Casey's last doctor visit, the doctor told him things are going better than she could have hoped for. That sounds good to me!! He will be coming home on Friday. We are all anxious to see him. I have unfortunately come down with a cold and am trying to get an appointment with my doctor to make sure it is nothing contagious.
Casey spent his Memorial Day weekend and bonding with Charlie's son Conner while watching The Teenage Mutant Ninja Turtles, and at a Texas style picnic. He had his first experience with craw fish. Looks delicious to me.

I was not sure if the photo would upload last time, so I did not explain who is in it. The last photo was Brandon Siemasko, Charlie Fry and Casey Coble. Brandon swam for LAC and is now a recent graduate of Auburn University. Some of my facebook friends foster puppies. It seems like Charlie and Melissa foster LAC alumni.


Tuesday, May 21, 2013

May 21, 2013

Casey has settled in with Charlie and is doing well. He is being very careful about where he goes and who he is around. His resistance is low and he doesn't want to get sick. He is looking forward to coming home on May 31st. He will be home for 2 weeks and then back to Houston and back into the hospital. During his time at home he will be in California at a swim meet. He is happy that his treatment schedule works out for him to be at that meet.
Some people have asked if Casey's treatment is free of charge since it is a clinical trial. The bills have not come in as of yet, but this is my understanding, the experimental drug Blinatumomab is free of charge, all other drugs (antibiotics, steroids, anti fungals, etc.) his hospital stay, doctor visits, nursing care, lab work, etc. are billed at normal prices.
For now, Casey is hanging out with the Frys, going into the hospital every other day and just laying low.

Thursday, May 16, 2013

May 16, 2013

On Tuesday, Casey had a bone marrow biopsy done and was released from the hospital. He is wearing a portable IV at all times in a backpack. I suppose once a space monkey, always a space monkey.
He will be going to the hospital every 48 hours to have the his medicine refilled. Because this is a clinical trial, Hershey does not have the medicine that Casey is getting which is why he needs to stay in Houston. Nurses will be visiting Casey at Charlie's house. Melissa called me to check on what kind of food and drink she should get for Casey. They are not only allowing him to stay at their house, they are going out of their way to make sure he is part of the family. I love them!

Casey just got out of his appointment with Dr. Thomas, who went over the results of his bone marrow biopsy. He called and was telling me idle chit chat.....meanwhile I was holding my breath. Just as I was about to pass out from lack of oxygen, he finally told me his bone marrow is clear of leukemia!!!! Just 2 weeks ago 90% of his cells were leukemic blasts. I am breathing again with a big smile on my face!

Gary was there for moral support during his office visit, which had now turned into a celebration. He is coming home tonight. So now Charlie and Melissa are taking over. Thank you with all my heart to all our good friends.


Monday, May 13, 2013

May 13, 2013

Casey had a rough couple of days. A fever started to set in on Thursday night and continued throughout the weekend. The nurses had him packed in ice, and Casey was feeling very sick. His lab results were all over the place, so they are not letting him leave the hospital today. The fever finally subsided yesterday and he is now able to eat a little bit of food, but is very tired. Gary is going to change his flight to come home on Thursday instead of tomorrow. Southwest Airlines is letting him do that with no additional fees. Gotta love that! In today's world where the airlines nickle and dime you for everything, it is so nice to have an airline going the extra mile to accommodate you.
The treatment Casey is receiving is a clinical trial, which means it is not FDA approved and he is a guinea pig to test whether or not it does what it is supposed to do. It is in the second phase and they have had great results with the first phase. The protocol is named BITE. The drug is from Germany and it attaches to your cells and turns them into killer cells which turn around and destroy the cancer cells. The fever hopefully is because of his mutated cells going to battle against the leukemic cells. The treatment is targeted specifically to his cells unlike traditional chemo which kills everything. I don't think he will lose his hair this time. MD Anderson was allotted 30 spots for this trial. We feel lucky to have Casey be a part of it, although I don't think he was feeling too lucky this weekend. The explanation gets a lot more scientific, and that is when I turn to my sister, Debbie and say Huh! She always knows what they are talking about.
I was able to spend Mother's Day with my daughter Stevie, my mother and my sister. I did miss seeing Casey, but hearing that he was able to eat half a hot dog yesterday, was a great gift. Hope you all enjoyed your day.

Thursday, May 9, 2013

May 9, 2013

Casey is doing well on the treatment. I came home from Houston on Sunday, and Gary is flying out tomorrow. Casey has been alone in the hospital all week, we are both anxious for Gary to get there. Casey is running a fever today and is not feeling well. They did tell us that is a possibility because there is a fight going on inside of his body. Sure do feel helpless. They were talking about discharging him tomorrow, but I doubt if that will happen now. Gary will be in Houston until Tuesday to get Casey discharged and settled in at Charlie & Melissa's house.

Casey's friends, Kyle, Tyler and Derek have put together a golf tournament on August 10th. I am so touched by the response from everyone and the hard work the boys have put into pulling this event together. The 4 boys just got home from a golf weekend a few days before Casey was told his leukemia has once again relapsed.
Following is the link http://www.youcaring.com/medical-fundraiser/casey-crusade-golf-scramble/57080

Thank you all for your continued prayers and support.

Friday, May 3, 2013

May 3, 2013

Today is Casey's 31st Birthday.  We are celebrating with cake, cheetos and chemo!  What a cocktail.  My hotel shuttle driver took me to the grocery store this morning so I could get Casey a cake.  She got some balloons for Casey, she said it would make his room feel like a party.  She is from El Salvador and asked me what my name would be in Spanish.  I said "Peggycito", so now she calls me Miss Peggycito.  Down here they always call women Miss and then their first name (like Miss Stevie).  The nurses were just in here to serenade Casey with "Happy Birthday" and they brought him a little cake and a handmade blanket.  A little different from his birthday last year, but not a bad day.

Casey seems to be handling this treatment well.  Last night his blood pressure went down to 98/48, but is now up a little, and he is running a very slight fever of 99.  Later this week they will increase his medicine, but they have to make sure he can tolerate it.  His counts are dropping.  We were told his counts should not bottom out like on traditional course of treatments, but there will be ups and downs.

We have a lot of cake if anyone is in the area, stop on in and have a slice.


Wednesday, May 1, 2013

May 1, 2013

Casey was admitted into the hospital last night.  This place is a lot nicer than my hotel.  The room has 2 televisions and a sofa.  His food is served by people dressed in black and white tuxedo outfits, and he says is tastes good.  We arrived at the hospital at 7:15 am yesterday and he was admitted into his room at 9:15 pm.  I ended up sleeping on his sofa and walking back to my hotel this morning.  He was given a transfusion last night and has started his drug this morning.  So far so good.  His discharge date will be Monday, May 13th.  I have gotten a some requests for his address in the hospital
MD Anderson Cancer Center
Paul "Casey" Coble - G1642
PO Box 300206
Houston, TX  77230-0206
The other day we were walking through the hospital with a group of other people, when a woman picked me out of the crowd of cancer patients and said "you will get through this, stay strong".  Reminded me of the time at the state swim meet where they picked me out to direct me to the handicap seating area.  Thinking I better get a physical.  I did have to cancel my haircut appointment....must look worse than I thought.
Also a huge thank you to Eric & Kathleen Mohr for being so very kind and generous.