Monday, March 29, 2010

UPDATE...OVERDUE

So sorry you guys, I am well OVERDUE for an update!!!  (Much like with our bills) LOL! Last I blogged Casey had just had his 2nd liver transplant and all the doctors were ooo'ing and ahhhh'ing about how well Casey looked right after surgery and how quickly he recovered!  It was like no big thang to him...that's how he rolls!  Been there...done that!  We both knew what to expect and we both  knew that everything would be alright!  Dr. C, his surgeon, is an awesome doctor and I put all my faith and trust in him.

Casey has been doing very well, as far as recovering from the transplant.  Since this was not his first rodeo, this cowboy rode this out like a champ!  He had to go to Liver Clinic twice a week and will be released this Friday!  Being released means that he won't have to go back to the Liver Clinic until his one year anniversary!!  Hopefully his new 16 year old liver will be a very promising liver and we will be able to get back to a normal life again and take up where we left off on starting our own family!! He had to have two chemotherapy sessions as a precaution in case there were still microscopic cancer cells in his blood stream.  During his recent visist with his Oncologist, we found out that he will need two additional sessions due to bloodwork still showing there are cancer proteins in his body. :o(  The actual process of chemotherapy is not the bad thing...its the side effects!  He feels so fatigued, his joints ache, and he becomes nauseated.  Not to mention, his hair falls out and he breaks out all over his upper body.  But better safe than sorry! :-)

Because of Casey's ongoing dose of immuno-suppressive medications and his two rounds of chemotherapy before and after surgery, his Mercedes Benz shaped incision is not healing very quickly.  :-( (That is as close as we will ever come to a Mercedes Benz Emblem!  LOL!)  Since his incision was not healing quick enough, they had to apply a Wound VAC to it.  This is very interesting...for those of you who have never heard of a Wound VAC, google it.  It blew my mind!  It is a device that uses negative pressure to promote healing in the open area. It is used by forming an airtight seal over the area and "sucking" all the drainage out and pulling new tissue to the top.  He basically has a tube sticking out of him in the incision area which is conncected to the actual Wound VAC which he carries around in a pouch...much like the satchel that Alan carries in the Hangover!  LOL!  It is working slowly but surely.  He has to get the packing and tubing removed and replaced twice a week.  It is such an expensive hassle driving to and from Baylor- Dallas!  If I ever see another hospital again...it will be too soon!!!  During Casey's healing process, liver clinics, wound clinics, chemo therapy...I had the additional worry of my brother and sister being in the hospital!  My sister donated a much needed kidney to my brother!!!  Both brother and sister are doing fine...but had their share of complications! But that's a totally different blog!  ;o)

Saturday, February 27, 2010

What doesn't kill us makes us stronger

I'm taking a break from catching up on blogs from Casey's 2nd transplant to blog about something that Casey asked me yesterday that I will never ever forget.  He was just sitting in his favorite chair; I could tell he was thinking about something very profound.  He asks me out of nowhere, "Baby, do you think there is something really important that I have to do in life?  I mean, why else would God give me a second and then a third chance to live?  If there wasn't something really really important that I needed to accomplish, then God would have taken me the first time my liver failed."  He says he is going to work on figuring out what it is that he needs to accomplish to make this world a better place.  I'm sure God has a very special plan for him. He deserves the best life ever!

I have always wanted children so I told him that it was not his time to go because he still needs to father my baby! ;-) He had a vasectomy during his first marriage.  We had begun to talk about a reversal before he got sick the first time.  After he got sick, the thought of having that procedure done had to be put on hold for at least one year after his transplant.  One year after his transplant is when he found out that he had cancer and needed another transplant...so the reversal must be put on hold yet again for at least another year! He says, "Maybe that's it...maybe we are supposed to have a baby who will grow up to be very important to the world...like the one who finds the cure for cancer!!"

God tests us in so many ways.  What doesn't kill us makes us stronger.  Regardless if God has a really important plan for Casey, the most important thing is that we have both changed from this experience and learned so much!!  We have grown closer and have taken our relationship to a level that most couples never experience!

MUCH NEEDED UPDATE: THIRD LIVER IS A CHARM

For those of you that know us really well already know that we finally did get "the call" that we had been waiting for!  Due to all the stress and mayhem, I have not really felt like blogging in a long long while! I apologize to those of you who have been following my blogs!  Of course for those of you who are on my Facebook, you had been getting updates frequently!

Let me start all the way back when we got the much anticipated call.  It is all a blur right now, but I think I can mamage to remember the most important highlights! On Friday, January 29, 2010, Casey got a call from Baylor Transplant services during the early part of the day.  We were both at work and really were not expecting to get this call since it had been almost a month since the last false alarm.  Transplant services informed Casey that he was YET AGAIN a back up for a liver that had come up!  WTF, he was a back up the last time he was called and was told that he would be NEXT on the list!!  The reason he was a back up this time was because the liver was coming from a 16 year old boy.  There was a pediatric patient that was ahead of Casey on the list.  Since this was a young boy, they must consider the needs of a child first.  The only concern was the liver was too large for the pediatric patient and it would have to be cut in half.   The committee had to make the decision to either cut the liver in half or give the whole to Casey.  It was hours and hours before we got a return call.  It was around 9:45 pm when transplant services contacted Casey and said they were still up in the air with the decision...and not even a minute later, the same transplant nurse called right back and said the liver was his!!!!  Talk about relief and excitement!!!!  We had not anticipated this call so we were not very prepared.  We had not packed, it was a kid weekend so we had the kids that night, and we had not found a dog sitter for our dogs!  But not to worry!  The kids' mom was very prompt to come pick them up and since it was really late, it was bedtime for the dogs anyway.  I decided I would just leave the dogs at home and come back home in the morning to let them out, feed them, find a sitter, and shower and change.  Dogs are just like kids!  I was so worried about them!!

We headed toward Baylor Hospital in Dallas around 10:30 pm.  We had to be there by 11:45 pm.  It was smooth sailing and thought we would get there early...WRONG!!!!!  Once we got to I-75, there was a traffic jam!!  Why in the world would there be a traffic jam at this hour?!  Turns out there were two accidents up ahead and it was down to one lane!!!  It took us about 30 minutes to get to our exit which was only a mile ahead!!!  No worries...we made it right on time!  We were there on time, but ended up having to wait hours and hours before Casey went into surgery.  Surgery was set for 5:00 am Saturday morning.  The 2nd time around was not as stressful and hectic as the first time.  There were very few doctors and nurses coming in and out of his room; no research nurses bombarded him with questions. The few doctors that did come to see him were very excited and eager to get the surgery started!  It seems that Casey is a really big deal around Baylor Hospital!!  No one has ever been through what he has been through and the doctors are just flabergasted with his story!  One of the doctors did have a good talk with us regarding Casey's cancer situation.  He told us that if once they got Casey opened up and they saw the cancer had spread, they were going to have to sew him back up and cancel the transplant!  They cannot do a transplant if the cancer has spread outside of the liver.  Several tests pointed towards the cancer not having spread...but it had been a month since any tests had been done.  I was so scared!!!  I have never prayed so much in my life!!!  After Casey finished filling out all the paperwork, we took naps until 5:00 am.  The clock struck 5:00 am, but no one had come to get Casey.  He wasn't even rolled into the O.R. until about 6:30 am!!  His mom and I waited in the pre-op room with him for about 30 minutes and then he was rolled away for surgery!!!

After his mom and I ate breakfast, I drove home to shower and let the dogs out and find sitters.  I was hoping not to get a call in a few minutes to inform me that they were going to have to cancel the surgery.  But several hours later, no call.  No news is certainly good news!!!  After several hours later, one of the surgeons notified his mom that everything was going great and they found no traces of cancer outside of the liver!!!  They had gone ahead with the transplant!!!!  Hallelujah!!!!!!

The surgery took about 5 hours.  He did very very well!!!!  He was in ICU for one day only and then was placed in his own room the following day!!!  All the doctors and nurses were so amazed at his progress!!!  He would tell them, "That's how I roll!"  His oncologist who was so pessimistic in the beginning was now calling him a STUD! LOL!  The 16 year old liver probably had alot to do with how soon he bounced back...as well as Casey's optimisitic attitude throughout this ordeal!!  God bless the family of the donor!!  The saying "third time is a charm" is certainly true...except in our case it's "third liver is a charm!"

Stay tuned for a continuation of his update!

Wednesday, January 6, 2010

MORE GOOD NEWS

I really need to be a lot better in updating my blog daily or at least every other day.  I feel like so much has transpired since I  last posted on 12/28/09.  We are now well into the New Year of 2010 and we have received very good news and have had some concerns which have been addressed.

I will start off with what transpired New Year's Eve.  We were both off that day and slept in late.  Casey was still hurting from having had his wisdom teeth pulled over a week ago.  I failed to post about this and I can't imagine why because it made me so mad!  He went in to get checked and the nurse told him he DID NOT have dry socket and just prescribed him some muscle relaxers because she said he was clenching too much!!  Thank God the actual Doctor called him back the next day before we paid for the prescription.  He was concerned with what the Nurse had told him and how he said he felt, so he told him to come back into the office free of charge so he could take a look. (He wasn't in the office when Casey went in the first time.)  IT TURNS OUT HE DID HAVE DRY SOCKET!  Stupid Nurse!!  So they  packed it with medicated gauze and told him he should feel relief in about 30 minutes.  He felt better but it still hurt bad.  But we have to take into consideration that Casey is taking anti-rejection medication, two different kinds at that.  These anti-rejection meds lower his immune system so that his body won't try to reject the foreign object in his body (the donor liver).  So the common cold, flu, sinus infection, etc...takes twice as long if not longer to get better.  Thus, why the healing of having his wisdom teeth removed is taking so long.  The pain is much more manageable now than it was.

Ok, back to New Year's Eve.  We were off because we were going to Round Rock to visit my sisters and spend the New Year's holiday with my family.  Casey was still in pain so she slept a little longer.  When he finally woke up, we finished packing and headed on our way...South Bound I-35!  I was so anxious to see my family!  I drove and let Casey sleep some more.  He practically slept the whole way there!  We left around 12:30 and got there a little before 4pm.  We had been there maybe an hour or two when we got a call from Casey's transplant coordinator.  She stated that since Casey was so high up on the transplant list that we should be prepared for a call anytime now!  Being that it was NY Eve weekend and many accidents happen, it was a good time to be prepared and stand closely by the phone.  OMG!!  That was awesome news!  But wait!  We are in Round Rock at the moment...that's 3.5 hours away from home!  Do we need to drive back home or should we wait and just leave the next day?!  We were at odds.  So we called the coordinator back and asked her what the time frame was.  She said IF we got the call that we would have up to 6 hours to get to the hospital!  Ok, great...so we can just continue to visit with my family and just haul butt home when we get the call.  No call on NY EVE! :o(  Oh well, at least we got to enjoy the night.

But wouldn't you know, we got a call the very next day in the evening hours!!!  I couldnt believe it!  BUT, Casey was only a back up.  They wanted us to be prepared anyway because they were fairly certain that the patient in front of Casey on the list was not going to be a match.  So, we hauled butt home on a Friday night!  We were told we would get a call by 2am Saturday.  No call... But we did get a call later that morning that they were still testing the patient and liver and we would know if it was a match by 1pm.  We waited for a call...but nothing.  It was very bad news for Casey but great news for the person who received the liver who obviously needed it more or he would not have been higher up on the list.  We just looked on the bright side, at least we know that Casey is next on the list.  It could be as early as this week!!

As all this is going on, I am feeling a little concerned with Casey. He had been talking nonsense, jibberish, hallucinating and saying off the wall things while napping, sleeping, and when he would wake up.  This happened Friday through Sunday.  I dismissed it because it only happened when he was napping or sleeping or coming out of a deep sleep.  BUT, when I found out that he did it at work on Monday I was REALLY concerned!  I contacted his doctor and he had me take him into the liver clinic yesterday.  He had blood work drawn and then had to see one of the Liver Transplant coordinators and doctor.  All his blood work came out normal but my concerns also concerned the doctor and he sent him to get his ammonia level tested and to get an MRI done on his head. A high ammonia level is caused by a failing liver so we were certain that his level was probably elevated and thats what was causing his hallucinations.  Later that day as we were driving home from the longest day ever, we were called with the ammonia level results.  It was normal!  YAY!  But wait, if its normal, then that means something could be wrong in his brain!  Ugh!  What now?!  I was stressed and worried all night!!  Earlier this morning Casey was called with the MRI results.  It was normal!!!  He does have a brain and his brain is working just fine!!  The doctor thinks that sleep deprivation could be a possible culprit!  He has not slept well in weeks due to the pain in his mouth from the wisdom teeth removal.

So we are back to being A-OK and waiting for "the call."

Monday, December 28, 2009

It's been a while/Great News!

Its been a while since I posted any updates.  Casey has been doing very well as far as his cancer goes.  He has not had any side effects in about two weeks!!  Which is awesome, but there's always got to be something!!  I so wanted him to enjoy his Christmas break with the kids and our families...but about a week and a half ago, he started having some excruciating pain in his jaw.  He waited a while to make sure it just wasnt a side effect of the chemo; but the pain just kept getting worse as the days progressed.  So, he made an appointment with his doctor.  It turns out that his wisdom teeth on top and bottom were impacted and coming in sideways!!  Great!  When will he ever catch a break?!  He visited an oral surgeon for an evaluation and the Doc decided he needed oral surgery to remove the impacted wisdom teeth!  Just wonderful!  Even the smallest dental procedure is a major thing for a transplant patient.  So he had to wait three days before he could have the surgery...poor thing had to endure pain for three more days... so that he could take an antibiotic before the surgery and must continue to take them after the surgery.  His oral surgery was on Monday, Jan. 21st.  Everything went well!  Except for a few days later, the pain got worse!!!  As if the poor thing hasn't been through enough!!  They prescribed him some pain meds but not even two at a time would work!  They would only make him loopy!!  We had another interesting episode while watching TV together after having had taken some pain meds.  He decided he wanted to get inside the TV!!  He was interacting with the show Nip/Tuck!  LOL!  Thank God he didn't try to be a plastic surgeon and perform surgery on me!!  Good times, good times!!  ;o) The pain has lasted a whole week after the surgery so I made him call the doctor.  He had an appointment today after his CT Scan at Baylor...I will get to that later!  The doctor said that he did not have dry socket and everything looked good.  But what he was doing at night and probably throughout the day during his naps was clenching his teeth.  The pressure he was putting on the certain spots where the surgery took place was causing his pain.  So they prescribed him some muscle relaxers.  Can't wait to see how goofy those pills make him!

Now, back to the CT scan.  His liver transplant surgeon needed to write to the Regional Board in order to get Casey higher up on the  list for a liver transplant.  A CT scan needed to be done so that the results could be submitted with the letter.  The doc emailed me about an hour ago and said that his tumor/cancer looks better!!!!  Thank God!!!!  He said it looks smaller and has definitely not spread elsewhere!!  He also informed me that he was granted 34 points on the MELD (Model for End-Stage Liver Disease) score. 
For those of you who don't know...the lower the MELD score, the higher you are on the transplant list.  When he got his transplant last year, he was at a 24 and that put him at the top of the list.  He was alot worse off then, symptom-wise...so being at a 34 now is absolutely awesome!!!  Please keep praying!  Casey has been through so much already and he is so young!  He has got so much to look forward to and is staying incredibly positive throughout all this!!

Wednesday, December 9, 2009

YAY for Casey!

Casey is really excited today!!  He got a promotion at work.  He is now FELONY INVESTIGATOR and he gets his own office!  Guess what his decor will consist of ?  You got it!  Harley Davidson! :o)

He was feeling pretty pitiful yesterday.  I stayed home from work to take care of him.  His joints were aching really badly and could barely get out of bed.  The meds that were prescribed for inflammation are not working!!   He feels a little better today.  He was able to go to work for half a day!

Now he can barely sit still because of the excitement over the news of his promotion!

Sunday, December 6, 2009

Day two after 2nd Chemo

Casey is doing a little better after his 2nd chemo treatment than he did on his 1st.  He is not feeling nauseous at all...just a little tired with some pain in his joints.  The doctor prescribed him an anti-inflammatory to take twice a day after his chemo to prevent the excruciating pain he had last time.  He is losing most of his eyebrows and eyelashes as well as his facial hair.  His head is nice and shiny now!!