Sunday, April 17, 2011

Ho Ho Ho Hosanna!!!!

Today is Palm Sunday. Church celebrations were a great end to a CRAZY week.

The highlights were as follows:

Monday: Average Monday. Things are starting off just fine!

Tuesday: Brooke comes home from school early. We go to doctor. Strep. What??? She did not even have fever. John's surgery is tomorrow. Text doctor. Brooke has strep. Is that bad? Doc says ok b/c we are not cutting him open. No need for rapid strep test. Whew. Uh oh! Bree's eyes look pink now. No eye. Probably not says C.C. but we treat it anyway just in case. No Gymnastics for anyone tonight.

Wednesday: a.m.: Leave for hospital at 5:00 a.m. No school for Brooke. Bree gets dressed, hides eye drops and throws a fit before school. She wants to stay home too. She hates eye drops. CC and GG hold her down to put them in. She cries til just before CC drops her off.

p.m.: Arrive home, Bree still in a mood. John needs meds. Brooke wants Chick Fil A. John has a nose bridle, a nasal probe and a new stent. All three equal super discomfort. I am frustrated. I decide text my best friend to tell her how frustrated I am , in particular my frustrations with my sweet mom. Only the text I receive back is not from my bff, it is from my mom whom I apparently texted my frustrations to instead of my friend. That was very cool...NOT!!! Exhaustion and stupidity to the max. Mom took it very well. I think she must text her bff similiar frustrations about me (Is that true Aunt Shere'?)...hehehe. But wait Thursday is even better.

Thursday: a.m.: I am casually walking to my car to hurry to work for a few hours before I have to take John to the med center to get his nasal probe out. Three steps from my car, I trip and fall flat on my face. The contents of my purse, all my work papers and a huge glass of water go everywhere (water straight in my face). I stumble up and to the back door where my mom sees me and realizes something is wrong. She flings open the door and when she does the dog takes off. She takes off after the dog, I yell, "stop!", she does not stop. I take off after her (barefooted). I round the corner and I see her splat across the neighbors lawn. Now two are down. My neighbor is leaving for work, mom screaming at her not to hit the dog, neighbor thinks mom is screaming for help, I am screaming to neighbor to leave so we can get control of the situation in private. Mom says get the dog, I run after the dog and he runs to the park. I chase him. I am barefoot. There are lots of stickers. They embed my feet. I scream. I say, "to HECK with the dog ( probably did not actually say heck but this is a family blog)." I sit down to pick the stickers out of my feet. My drives up in my car, throws me some shoes and in the mean time the darn dog runs home on his own, straight into the backyard. Mom and I limp into the house covered with grass, sweat and stickers. John sees us and says, "where have you been? do you know where my glasses are?"

p.m.: Bree says, "momma it feels like I have fingernails in my throat." Oh no, does she have strep too?????

Friday: Nose bridle removed, Bree strep test positive! John is releaved. Both girls have antibotics. CC and GG have done their duty and then some. Time for them to go home. Momma needs a glass of wine and a long, long nap!!!

Our week was hard but we made it. Thankfully all four of us were smiling and well for church this morning. It was a beautiful, sunny day to wave the palms, spend time with friends, hunt some eggs and sing, "Ho, ho, hosanna, ha, ha, hallelujah, he, he, he, he saved me, I will trust in him."

Yes Lord, I will trust in you no matter what life brings me, how tried I am or what stupid makes I make. You sent your son to die on a cross so that I may be frogiven and I know that he is risen indeed.

Happy Palm Sunday!!


Wednesday, April 13, 2011

today's surgery

Hi all,

John is out of surgery. I have not seen him yet. He had another stent placed in his esophagus to try again to stretch that stricture out (sung to the tune of "work this mutha out"). This time he has a stop value on the end of the stent to keep the acid from coming back into his esophagus and making the stricture worse. He also has a bridle (yes, like a horse) attached to the stent which comes out his nose. This is to hold the stent in place. Many of you may remember that migration was an issue in the past. The bridle should prevent that. He was also given many steriod injections during the procedure to reduce inflamation. If you were starting to think it now, the answer is "yes", our doctor is a rock star. The stop value has nevereven been used on a human before John. The bridle will actually be removed on Friday morning so John will be ready to pitch Bree's softball game w/o a bow coming out of his nose (this was his greatest fear)on Saturday. The stent will remain in place for 1 month. After that, we will see if it worked. If it did, he may have one more surery repair the hernia that may have been the cause of the stricture in the first place. Lastly, he will come home with and for 24 hours have a probe in his nose to measure how much if any acid is getting into his esophagus. That is all for now. I am going to finish my lunch and hopefully see John soon. Thanks for the prayers.


Sunday, April 3, 2011

The latest and the greatest

Hi all,

As many of you saw on Facebook last week, John's latest PET scan was a beauty. It was just perfectly normal. The biopsies taken from his esophagus were all benign as well.

The best part of the story is that I was sitting at the nail salon at the Trelis Spa at the Houstonian when I received all this amazing news. I was there with my girlfriends from my neighborhood for a spa day and girls night out. I was having a great time but I just could not quite relax with the feeling of uncertainty that having these tests and awaiting their results brings. We were not suppose to get the results of either until Tuesday but on Friday afternoon at 4:00 as I sat in a semi-relaxed state getting my nails done.....they came. I saw a light flashing on my phone (phones on silent at the spa) and a missed call from Dr. Blackmon (her cell, could be good or bad :) :( ?). I checked the messages. There were 2 voice mails. One was from our oncologist's nurse saying she just wanted to let us know that they a copy of the PET and by the way it showed NO EVIDENCE OF CANCER. Then the tears began to flow. I barely made it through the next voice mail saying the biopsies came back unusually early and were all benign. Many more tears were flowing and I now have a very concerned nail lady. I gave her the quick version of the story which still takes 10 minutes and she congratulated me. I called John (even though it was against the spa rules, I did not think the nail lady would rat me out after that story). Bree answered and begin to go on and on as soon to be 7 year olds do. I keep saying through tears, "Let me talk to Daddy". She finally consented. I gave John the good news. He was very happy but in a different way than me because he never had any doubts that the news would be good. He has such faith and I guess a person truly knows better than any doctor or test when their body is healed. Needless to say, at that point I was truly able to relax and enjoy a wonderful girls weekend. God's timing is impeccable.

The bad news is I am way to old to be dancing 'til 2 a.m. at the Black Swan in 4 inch heels. My back hurt all week but it was still worth it.

I will write tomorrow to explain what happens next for John as far as correcting the stricture and thus allowing him to eat better. For now I must take a bath and go to bed. I turned 37 today and that ain't easy you know. I gotta go rest my tired, ol' bones.

Thanks for the faithful prayer!!!

Love Bec

P.S. John weighs 168 lbs!!!! Yippee!!!

Wednesday, March 23, 2011

later 3-23-11

So we are still here at the hospital.  John was just taken back for EGD and biogpsy.  The doctor explained that she will take an aggressive biopsy.  His GI doc took a biopsy that was clean but she wants to essentially "dig deeper"  to make super sure it is not cancerous.  The reason being that John's esophageal stricture is actually outside of his field of radiation.  The stricture could have also been caused by acid reflux but he has not had noticable syptoms of acid reflux.  Apparently you can have acid reflux and not know it but they still want to get the full picture. 

I truly appreciate their thoroughness and yet at the same time it makes me scared as heck.  Again John is not scared, he just seems to know he is ok.  I wish I could feel that way too.  I pray to God I can feel that way.  This cancer journey is a roller coaster and I have never been fond of carnival rides.  I prefer situations in which I have more control.  Some, namely John, might even venture to call me controlling.  This is my lesson from God that he is in control of everything . Even though I can  not always see the plan, there is a plan and the plan is good b/c God is good.  This I know outwardly but I must find a way to penatrate my heart.

Thanks for your prayers.


March 23, 2011

Today we are at Methodist Hospital.  This is our first time here.  We are usually at St. Luke's next door.  This place seems good.  The nurse has been nice.  John's procedure was to be at 11.  It is noon and we have not moved to pre op yet but our doc had a surgery before this proceure.  Surgery can take time as you know.  I am really only worried about time b/c John's blood sugar was a bit low a week or so ago.  It appeareu to be due to the fact that he has become very active again and just needed to take in more calories.  Since he is NPO today, I was afraid that he might get light headed.  He is sleeping now so that is good.  We are in a very nice room with a bed and TV to wait for pre op.  TMHS gets points for this luxury plus the wifi is really good too. 

We are very excited about the surgery on April 13th to repair  John's esophagus.  I am also nervous but he does not seem to be at all.  He would do it today.  It is kind of funny that everywhere we go lately for medical care the providers look at John,  look at his chart then are amazed at how good he looks.  I have to attribute that to his attitude.  He has never acted sick.  He has always seen this as a temporary situation that he just has to get through.  I am so proud and amazed by him.

I will let you all know soon how today goes.

Thanks for the loving prayers.


Sunday, March 20, 2011

John update

Hi Folks,

I am currently a bloggie loser.  I have not been diligent in updating you about my John but I say, "no news is good news".  

John is truly feeling great.  He has gained about 16 lbs since this summer's low of 143.  He looks great.  He is coaching Bree's softball team and loving every minute of it.

The "bad" news is, and it is very relative,  he is not able to eat as well as we would like.  He can mostly only pass liquids now due to a benign esophageal stricture. 

The "good" news is, we live in Houston and have access to the fabulous Texas Medical Center. 

This leads us to this week.  Thursday, John will have a scope (he has had many of these) by Dr. Shanda Blackmon (she has never scoped him).  During the scope, Dr. Blackmon will look around at the stricture and take some biopsies (biopsies have already been taken and were benign).  Dr. Blackmon will do her own scope and biopsies b/c the plan is that in about a month she along with plastic surgeon, she will perform an esophageal reconstruction on John.  Thus allowing him to eat normally again.

This is very exciting and also scary b/c it is major, major surgery.  Both doctors will block off the entire day for the surgery.  It will require them deflating one lung and opening his chest among other gory details.  He has passed all heart and brain screenings for surgery with flying colors and Dr. Blackmon said that he certainly does not look like the same guy who has been through all the things which his chart details for this past year.  Yes Lord, for this and many other things, we are so very grateful. 

While the Butler family is still experiencing its fair share of curveballs, we are still very, very blessed and truly happy with all of the gifts God has given us.

I ask for prayers for John tonight has we face this next curve ball. I also ask for prayers tonight for two of our church families who are facing medical issues right now.  These prayers we pray with a heart that knows that God's plan will make every thing right.

Love, Bec