Butler Family Curveballs

Ho Ho Ho Hosanna!!!!

2011-04-17T14:21:00.000-07:00

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 way...pink 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!!

Bec

today's surgery

2011-04-13T10:43:00.000-07:00

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.

Becah

The latest and the greatest

2011-04-03T19:15:00.000-07:00

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!!!

later 3-23-11

2011-03-23T16:01:00.000-07:00

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.

Becah

March 23, 2011

2011-03-23T10:07:00.000-07:00

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.

Bec

John update

2011-03-20T19:15:00.000-07:00

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

one year since the first of many curveballs

2010-12-22T19:13:00.000-08:00

Hi Friends,

It has been one year ago tomorrow since John was diagnosed with cancer (12-23-09). On that day we were told only that he had cancer and it had spread to the lymph nodes but the ENT who did the biopsy was unable to determine the source of the disease.

We were able to schedule a PET scan to give us a better prognosis on 12-28-09. That meant Christmas with cancer of an unknown source. That was hard. There were lots of tears. Many in silence and moments alone. We made it through with bright moments and celebration of the birth of Christ.

On 12-28-09, we found the source, base of tongue. It was Stage IVB, very advanced but treatable.

It has been a very hard year in many ways but in some ways it has been the best year of ours lives. Cancer still sucks but everything else seems to make a lot more sense.

On 12-23-10, John is cancer free. He can swallow. He feels good. We are blessed. God is good and so are our family and friends without which we would never have been able to see the BLESSINGS of CANCER! Glory be to GOD tonight and forever more.

Amen.

Becah

Praises to Him once again

2010-12-17T07:19:00.000-08:00

Hi Friends,

John has turned a corner this morning. At about 1 a.m., the nausea abated and he slept. He woke up at 7 and feels much better. I just talked to his sweet doctor who says the blood work looks much better today and his chest x-ray was negative. He has ruled this a very bad stomach virus....Yippee. If he can tolerate liquids, he will come home today.

I came home late last night so I talked to the dr. this morning from home. I just called John to inform him that he is much better and he was pleased with this news and concurred its truth.

Thanks for your prayers and offers to help with the girls. I will be attending their Christmas parties after all and all gifts were wrapped and delivered :).

Love Bec

Latest Curveball

2010-12-16T15:50:00.000-08:00

12-16-10

As most of you know, John had his stents removed from his esophagus last week The procedure went great. There were no complications and no blood loss.

He was fine for about 4 days, able to swallow solids easily. Over the past few days, he has suffered from nausea and other stomach issues with incresing intensity. Our wonderful doctor advised us to go the the ER this morning.

We are currently at St. Luke's in the Med Center waiting for a room to open up. They are in the process of running several tests to determine what is going on. We are praying it is just a routine stomach virus. His white count is a bit elevated so his receiving IV antibotics along with nausea and now pain meds. At 5:45 p.m., he is finally sleeping for the first time today.

Please pray that this is a common virus due to run its course. Please pray that I do not turn into a manic as I had and do still have high hopes for this to be a Merry Christmas. I am very stressed about trival things such as getting teacher gifts wrapped and attending my kids Christmas parties at school. I know that seems a bit trite but it gets old having to explain to them that daddy is a little sick again and we have to change the plans again because of it. If you could keep my MIL and FIL in your prayers too, he is also hospitalized right now and moving into a long term care placement tomorrow.

Sorry this post is a bit negative, I think I need the prayers as much as John right now.

Love, Bec

John and his "special" team of stent retrievers

2010-12-07T19:36:00.000-08:00

Hi all,

Rejoice, Rejoice....my blog is found.

John is resting comfortably at the fabulous, world class Hotel Saint Luc. Here they are assembling a top- notch team of medical porfessionals to slowly and skillfully retrieve 5 inches of metal agony currently pressing against his previously elegant esophagus.

The retieval was to have taken place on December 16th but that little bundle of joy decided to make its way into the world just a bit sooner.

This is okay with us because our mini, metal madman was starting once again to have an attitude with John's esophagus.

Currently, he is really feeling ok. The nausea which accompanied metal man's last appearance seems to be absent this round. Prayers to the lord for that blessing.

He is currently hospitalized mainly as a precaution.

Tomorrow will consistent of resting and hydrating in preperation for the joyous appearance of metal man at the hands of John's own personal gastrointestinal gurus. The little man will come out offically at 8:00 a.m. on Thursday.

We appreciate your prayers. We are so very grateful for God's work in bringing a competent and caring medical team into our life. Please bless there hands and hearts Thursday as well.

With love,
Bec

STENT UPDATE......

2010-12-02T21:24:00.000-08:00

December 2, 2010

We scheduled a Barium Swallow Study for Monday. I wanted to do it tomorrow but John is presenting at work and does not want to miss. We had a little squabble about this b/c I did not want to wait and risk things going south over the weekend. I do appreciate his work ethic and I love that about him so it's okay.

He seemed good tonight. Ate some dinner and cleaned the kitchen (yippee), not as much as he has been eating but he enjoyed a homemade shake after and that went down fine. The pain seems manageable without a going all rock star drug crazy.

Pending a good swallow study Monday, we have a date set to have the stent removed. It will come out December 16, 2010 which is planned to be just in time for a Merry, Merry Christmas at our house. If the study shows migration, I am not sure if they will just take it out earlier or place a new stent.

Thanks for all the prayers today!!

Love,
Bec

P.S. I got the Mother of the Year Award today for failing to show up at my daughter's class for Mom Reader. I just forgot to write it down. LOSER ME!!! She was a bit sad but seems over it now and I will go next week.

P.S. II Thanks for praying for my bff's friend whose husband died as well. Night!!!

Prayers for the Stent

2010-12-01T20:45:00.000-08:00

Hi all,

As most of you know, John has a 5 inch metal stent in his esophagus. It is there because he has a stricture (tightening of the elastic-like part of his throat). This stricture was likely caused either by the high doses of radiation or chemotherapy which were necessary to blast his cancer. The doctors have tried repeated balloon dilatation of his throat which is a relatively simple procedure except that once during this relatively simple procedure, John had a stroke (likely a reaction to the drug demerol). The dilatations only worked for a short while. So anyway, he had a stent placed in September. This one migrated to his stomach (and still resides there, btw) so a new one was placed in early November. While this one has not been w/o side effects (mostly pain and mucus), it has allowed him to eat a more regular diet. The plan is for this stent to stay in place until the end of December in order to more permanently stretch his throat.

The reason I am writing now is to ask for some extra prayer tonight. Yesterday and today, John's food is not going down as well. He can still eat but with more strain and the pain appears to have increased. I texted his wonderful doctor tonight to ask if he thought he needed an x-ray to check the stent placement and he believes we do and will order one tomorrow. This is not the end of the world. It is not life threatening in anyway but it is disheartening for John b/c he is so ready to have the stent out and does not want to go to the hospital for a another placement procedure plus anytime under anesthesia scares the goo out of us. Please pray tonight for his body and his spirit. I also ask that you pray for me to stay patient with him b/c sometimes it is hard for me to even comprehend his physical pain and I don't always realize how hard he tries everyday to keep smiling and being an active husband and daddy.

Also I have another prayer request, one of my best friend's texted me tonight to say that a mom and daughter friend of she and her daughter's just lost there husband/daddy tonight. He was in car accident about 6 weeks ago and passed today. Please pray for this newly single mommy and her precious, little girl. This makes what we are dealing with seem so easy, huh.

On a very happy note, the girls went to Christmas Choir Camp at church tonight and had a blast. What a blessing the volunteers and staff at Northwoods are to my little girls! I am so happy they have opportunities like this in their lives.

Good Night All,
Bec

Butler Family Curveballs: Blogs from my mom

2010-11-29T11:03:00.001-08:00

Butler Family Curveballs: Blogs from my mom: "Hi Friends, Upon seeing my blog last night, my mom shared with me what she has been writing to her friends about this experience. This is ..."

Blogs from my mom

2010-11-29T11:03:00.000-08:00

Hi Friends,

Upon seeing my blog last night, my mom shared with me what she has been writing to her friends about this experience. This is her perspective. Again very hard for me to read but I think God is driving me to do this maybe to reach someone else out there in our situation.

Love, Bec

Jan 4, 2010

Hello Everyone! I will not be able to make the Friday start of 1st place. It is my first day back at work and mandatory meetings take precedence. I wanted to send an update on my son in law John and ask for your continued prayers. He is starting chemotherapy tomorrow and radiation next week. The doctors are very optimistic for a complete cure. He is expected to have a lot of pain, inability to eat (thus the feeding tube) and inability to talk due to the blisters (cancer at the base of his tongue). Please pray for strength for the little family as they deal with this circumstance. We all believe God's hand is on this and all will be well this year! I will miss everyone and look forward to getting the book and getting started again.

Love,

Carol

713-806-6443

Jan 14, 2010

Hi Friends!

John had his first round of chemo; full days on sight and an infusion pump 24/7. It was a doozy; but the whole family handled it like champs. Becah has turned into quite the nurse and cook. Mom and I stayed in the background praying and playing with the girls; we have been released from duty for now; 1st me then Mom. John went to work with feeding tube and port Tuesday and was greeted with cards and letters from students and staff as well as a giant basket of goodies for additional chemo rounds - AND a Klein Bearcats cap for the day he dreads most (hair loss) - (PS - don't tell him - but he's already bald in the back). Neighbors, friends and church are kicking in with food, prayers, cards, suggestions (from others who've been through this kind of thing), offers of babysitting, transportation, etc. I am amazed at the peace and joy in the household. I hear John is writing a journal on "the good side effects of cancer". Thanks for your prayers.

Love,

Carol

Feb 10, 2009

Hello Everyone! Well the treatment is in full force; radiation and chemotherapy. John has finally decided working is not the priority this week. He may be convinced that this may be the only time he gets to rest and not be called lazy. Other than gastric tube leakage, mouth full of thrush, and general weakness, he seems to be tolerating everything pretty well. Bree has shown a little anger at school; but the counselors are all over it - making John proud of his peers. Becah has been the organized and strong go getter; but finally reached her limit and summoned help! (Its hard for a Mom to wait patiently to be called). Finally, Mom and I went over on Sunday night at their call (and at their wit's end). The excitement of the game was just what we needed. Bree and Brooke were Cheerleaders! Some of you got Who Dat? texts and others got phone calls being entertained by a full fledged home made band (drums, maracas, and tambourine) and singing of "When the saints go marching in". We laughed until we were silly!!!! Just what everyone needed. 2.5 weeks down and 4.5 to go; then more scans. Pray for full and complete healing! Love to all! Carol

March 10, 2010

Hi Everyone!

One and half more week of radiation and weekly chemo for John. The doctors slipped in another week right when everyone was looking forward to the finish line. Last week was a doozy with Becah and girls all having strep throat and the nasty GI disturbances that went along with it. John was able to kick in and help them through their crisis, but has since finally succumbed to drug therapy (pain meds) and mostly bedrest. He is miserable to say the least. The swelling and burning in his neck and throat will start to subside once the treatments are finished. The doctors say, this is par for the course and are pleased that treatment is right on track. Mom stays during the week and comes home to rejuvenate on the weekend. Bec has been juggling things like a pro, keeping up with work, kids, John's pain meds, nutrition, etc. Mom has been an amazing support for her physically and emotionally. I will be full on with the girls during spring break to give Mom some relief and Becah and John a chance to face this last week head on. Prayers for stamina, one week, one day, one hour at a time. Love, Carol

April 16, 2010

Hello Everyone!

Radiation has been over for 4 weeks. The burns in his neck and throat are subsiding, but John is still not able to eat solid food. This week a doozy of chemo - all day at the cancer center and home with a continuous infusion. John is SO not used to being out of control and having to be catered to which results in some anxious moments in the Butler family. Preserverence is the key and Becah is standing strong. Mom is there again this week providing continuous moral support and nursing advice as needed; such as last night when John in a ferver of anxiety accidently pulled out the IV port thus interupting the chemo 2/3 finished. Perhaps it was God's way of saying enough is enough! Dr. B. says John is amazingly healthy in that he can tolerate the highest dose of chemo possible! John may have a different expression for the word tolerate! I'm told 2 more rounds like this and the treatment course will be OVER! Thanks for your continued prayers and support! Love, Carol

May 12, 2010

My dearest friends, I'm a mess! I need your prayers. I am so scared - John found a swollen gland in his groin and its yet to be figured out. The PET scan was yesterday - we are awaiting the results. Becah and I had uncomfortable words last night as I pointed out my perception of "denial". (John not wanting to discuss the swollen gland with the doctors & Becah avoiding it playing with the girls until past their bedtime) It may be nothing - Its probably nothing - BUT - my fear got the best of me and I chewed them out for not telling the doctor yesterday. Below is the email I sent her this morning. Please pray for peace in their family (immediate and extended - including me) and for excellent PET results for John. Carol

May 13, 2010

Becah, Though some words were lost in the texting, I heard your heart from the messages you sent last night. I'm sad for your tears; but I also know that those tears are God's way of having us rest in His arms. The J Butler's lives have been turned topsy turvey and you are probably trying hard to find some stability in the whirl wind. My darling - I can't begin to know what all of you are going through. I am sorry I let my own insecurities get the best of me last evening. Please forgive me. I know you are equipped by God to stand up under any circumstances that come your way. If you can find the little book - God Calling this AM - read today's message. Psalm 23 is also very comforting and I know that it is etched in your heart since childhood. Today is God's day; let us rejoice! I love you and John and Brooke and Bree! Love, Mom

May 13, 2010

Hello Everyone,

John's PET scan is 90% improved; he will need a few more rigorous rounds of chemotherapy! He is not excited about that prospect at all; but very thankful for the great improvement from the pre treatment PET scan. Since I've updated you, he was in the hospital for 7 days with dehydration and pneumonia. His esophagus is quite damaged from the radiation and he has not had solid food for almost 3 months now. In spite of it all, he is drinking "boost" through the g tube, working and working out! He will have a procedure tomorrow to stretch the esophagus in hopes of getting him able to eat and thus build up his energy for the next round of chemo. Becah, Bree and Brooke are troopers as is Mom who is on call to help them out as needed. Please continue your prayers!

May 26, 2010

Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord. Psalm 27: 14

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run, and not be weary; and they shall walk, and not faint." - Isaiah 40:31

http://www.confessionsofasnowflake.com/ has a link to the song "Eagles Wings"

Sweetheart, My heart hurts for you but this I know, My God WILL protect your family! I love you!

Love, Carol

June 17, 2010

Friends, John had a 2nd stretching of his esophagus yesterday in efforts to get him swallowing better before last chemo rounds; so as to prevent aspiration from vomiting, etc. He experienced severe complications (possibly stroke and or brain mets according to doctor). Lots of stroke- like symptoms including inability to function arms, legs, etc. properly; cognitively aware - this is good. Not a candidate for stroke protocol due to cancer and stuff. The good news is he is much improved this AM; knows where he is, what happened and moving extremities; also he was blind yesterday and today he sees!!!!!!! Praise God!!!! He has not been able to tolerate MRI up until now; shaking, nausea etc. He is in MRI now! My mom and I are with girls; as is my brother and sister in law; Becah's dad and step mom are with her and John at St. Luke's! Thanks for your prayers. Love, Carol

July 31, 2010

John is home and doing amazingly well. After workup in medical center, the decision is to let him take a breather from treatment. He still has a feeding tube, but his esophagus is stretched now to 15 cm; Dr wants to get it to 18 (normal = 20); so he will have at least one more procedure. The Dr. seems to think the stroke symptoms were a reaction to anesthesia (Demerol). He has gained all cognition back and is able to function normally with the exception of left hand function and this is getting better everyday. He kept the girls while Becah went out with her Mom's group one night last week - all did fine. The main focus now is his nutrition and he still needs help with the feeding, but learning to adapt to his disability (which we believe is short term). He will have another esophagus stretch in a week or 2 and a PET scan mid August. From there, it will be determined if and what additional treatment is necessary. He looks good, goes to work and exercises most days now - they have released him from OT and PT. They told him at the onset, this horrific treatment would be a distant memory in a year and the Butler's are looking forward to that. Thanks everyone for the support, love and prayers.

Love, Carol

Aug 16, 2010

Pet scan results: No cancer in throat or lymph nodes!!!! John is eating Tex Mex! God is good!!!

Love, Carol

Butler Family Curveballs: Hi Friends, Below you will find something I have ...

2010-11-28T21:55:00.000-08:00

Butler Family Curveballs:
Hi Friends,
Below you will find something I have ...: "Hi Friends, Below you will find something I have wanted to do for a long time. I copied and pasted all of the Facebook posts I wrote about..."

2010-11-28T21:54:00.000-08:00

Hi Friends,

Below you will find something I have wanted to do for a long time. I copied and pasted all of the Facebook posts I wrote about John's illness and put them on this blog. This is the best way I know to begin to tell our story. There is much more to it but it helps with the chronology of things. It was hard to read and on some posts I just closed my eyes (good thing I can drive a MAC desktop blind). Sometimes lately I get frustrated with John easier than I should because he is not always the same positive, funny guy I married but reading this made me really stop and think about what he has been through and continues to go through with his esophagial stent. This has been one hell of a year for all of us at the house of Butler. It is hard sometimes because he does not understand how hard it is to be a caregiver and I can't even begin to really understand his pain. I hope this blog will help us both tho work through it all.

This week we were all off for Thanksgiving. It was so much fun because we went to Lost Pines Resort, spent Thanksgiving with John's parents and other family, spent an awesome black Friday with my mom and decorated the house for Christmas. This week was also hard because as we prepared for our favorite holiday and the celebration of Christ's birth, we were also tainted with all the memories of this time last year.

Things are so much better now because the cancer is gone. But eating is still a challenge and the stent is so painful. Yet life is still really good. I have a loving husband to keep me ward at night. Our children are happy. We have a dog, a precious baby dog who brings so much joy. I love my job. In some ways, I have never seen my house look more beautiful.

That is why it is time for this blog, time to begin to tell our story. This whopper of a story that began on December 23, 2009. In was a warm winter day in Spring, Texas when out of nowhere or maybe from somewhere very special, the Butler Family was thrown a heck of a curveball. That curveball was cancer. A curveball started a game like no other we have played before. In some ways the game is over. But cancer is funny because even when the game is over there is an after party and that after party can cause one heck of a hangover. Like those days of youth when we partied all night, the morning after is bitter sweet. Your head hurts and your stomachs is queasy but you made some memories you will never forget and in my case I am just glad to have my partner with me to lay around and relieve the night .

And so it began like this.....

It began on December 23, 2009 but I can't get FB to go back that far so January 9th is the first entry. Please excuse grammar, typo and capitalization. I copied it straight from FB with no editing. Bec

Jan 9, 2010

The pump has been disconnected. First round of chemo complete. He is doing good, great my gram says and she is the nurse who has seen it all. Monday we go to get a mask made for radiation and that will start week after next I think. Thanks for the prayers.

John had a super day. Up and about the house all day. Did yoga (ask me if I exercised today). Very little nausea but everything tastes kinda strange and he says our kitchen smells like a school cafeteria. Thanks for the prayers. We are so blessed. Yippee!!! Off to get fitted for the radiation mask tomorrow.

John is at work today. I pray that he has the sense to come home if he gets too tired.

Hi all, Thanks for praying for John. He is doing great. Lots of energy. He is able to exercise as usual which is more than I can say for myself...hahaha! The only significant side effects this week were a really dry mouth and most foods taste pretty blah! But a friend has given lots of good suggestions to help with both issues. Radiation starts 1/26. Thanks for the prayers and love. Becah

John starts radiation today. It is at 11:30. Please pray for him.

John's radiation went well. He is downstairs cooking dinner as usual (and he thought cancer would make me learn to cook...ha!!). Radiation plus weekly chemo tomorrow... Thanks for all the prayers. They truly lift us up. Off to bathe the girls!!

3 days of the big treatment down and 31 to go!!!

6 days of the "big part" of our treatment down and 28 to go. Chemo and radiation tomorrow. Prayers appreciated. So far John is holding up well. Things are tasting funny but he feels good otherwise. Thanks for the positive energy.

Almost 2 weeks of the 7 weeks course of treatment down. It is getting harder to eat, it does not hurt just dry mouth and everything tastes weird. Got him a "HULK" at smoothie king today, 1800 calories in the large. I took a sip, gained 3 lbs. BTW, now that John eats very little I am making great efforts to intake his portions at each of my 3 daily meals. Just being a team player. Thanks for prayers.

The days are getting tougher for John. We are still good and we knew it had to get worse before it would get better. Please pray for him to stay up about all of it. Love Becah

Prayers for John tonight are appreciated. He is still doing good and attitude is positive but it is getting rough and painful. Thanks friends!!

John update: All is good. 4 weeks down & 3 to go! The "big treatment" will soon be history. It is painful but he is a super hero. I love him and I am so proud of him. I am grateful for his efforts for our family. Your prayers are really helping. Thank you.

please pray for my sweet john tonight. it is getting very hard as we enter the last week of radi/chemo. there is more chemo after this but the intense radi will be complete which should lessen the pain. your prayers ease the pain. thanks.

It seems like cancer is everywhere and I do not like it!

John begins his 8th and last week of radiation this week. Thought last week was the end and it got extended. he is good though.
Day 37 of radiation for John...2 more after this. Boy is he ready.

The radi machine is down. Repairman on the way. So we wait.

radiation complete....oh yea!!!

The girls were squashing me tonight and I said I can not breathe. John said, "Girls, get off mommy...it will be bad for all of us if she stops breathing!" I really am loved or at least needed!! HA!

John starts a round of chemo today. Would you mind saying a quick prayer this morning? Thanks so much.

John got some new meds today. He slept for 4 hours and I slept for 3. A world record in this house for the last month. Please pray he gets some relief from all these side effects. Still have major radiation side effects and now yummy chemo.
15 April at 16:03 · · Comment

Who knew one could sleep so soundly to the sound of a chemo pump in the background? I do not recommend it but if you are faced with the situation don't knock it til you try it.

John was admitted to the hospital. He is having extreme side effects from the chemo and radiation. Please pray for him. He has not been able to get comfortable or stop vomiting for 3 days. He will be fine but this is an extreme treatment. Thanks for your prayers.

John is a bit better. more rest w iv meds. still got a way to go but it is a comfort to be at the hospital w real nurses w drugs on hand that don't have to be crushed or swallowed. nurse becah is ready to retire I am an M.Ed. not an MD. thanks for the prayers, calls, texts, emails. Food for my babies. Family and friends thank you

Someone should invent double beds for hospitals so you can lay next to the one you love who is hurting!

Got to hospital this morning. john was gone. thought he flew the coup. alas he was in xray.

John is still in hospital. potassium level must come up a bit more to go home. he is better though. maybe 50 percent up to snuff. thx for continue prayers for comfortable and a break.

John is coming home today. Please pray that my nursing skills kick in hardcore. He may have a PET scan next week as well so if you would like to throw in some prayers for good results, we sure would appreciate it.

John is home. Thanks for the prayers but please stay on your knees as he continues to get better.

John is home. worked half day today against my advice but he wanted to. he is skinny. he and I are weighing in frightenly close in numbers. neighbors-no more desserts. asking for prayers over the next week for healing, strength to indure, ability to eat and a clean pet scan on may 4th. love bec

John update: Fever on monday & tuesday. chest xray showed slight pneumonia! Must have the defuncted port-a-cath out Monday as it is a risk for infection. PET moved to May 11th due to poor chest x-ray, don't want a bad read. If PET is clean, we won't need a need port. He is feeling pretty good now. Still very skinny!!!

why are waiting rooms so cold? I always bring a blanket but today I need two.

the scope revealed nothing, absolutely no disease! praise God!!!Hi FB: John update: He is feeling pretty good but eating is still very hard. We have a scope of his throat tomorrow and a PET scan on Tuesday. As I said before if the PET is clean.....no more chemo!!! Please prayers for ability to swallow and a clean PET!!! I will send knee pads if your knees start to get bruised. I am asking for big prayers!

Results today....praying and feeling really good.

the report is on the dr's desk. I am going to start biting my nails. please read it and call us.

90 percent improvement from first pet scan. some swelling still around esphogus that is likely due to treatment. we talk to oncologist tomorrow to find out for sure that treatment is complete but it looks really good.

oncologist likes his pet but still sees a bit of activity in a right lymph node and the hypopharnyx. this will warrant the two more rounds of chemo originally prescribed. john is a bit bummed but we are still so close to cured. endoscope to stretch his esophagus tomorrow should help him eat. please keep your sweet prayers coming. love bec

Outside listening to the sounds of tomball while john has his endoscope. birds, trains, it is nice.

Getting a new port a cath tomorrow in prep for chemo!

John has a scope of his throat tomorrow. gonna try to go way down and figure out why swallowing is so hard. he is feeling good though. could you keep him in your prayers tonight? love bec

John had another scope today. Showed massive ulceration from the radiation. It can heal but there is lots of scar tissue. Each time they go in, he is at high risk for a tear. The radiation it took to kill his cancer cells was very strong and this is a side effect. Please pray for him. He is so strong but it is so hard not to eat. So much of your life revolves around food. Your prayers make us strong. Love Becah

Dr. does not like the ulcers in the esophagus and wants biopsy. There was no radiation where some of ulcers are so ulcers are not explained by that. Could be do to stress or acid reflux but "C" has to be ruled out. Scope 6/9. Seeing another ENT for a different scope of the throat and poss. biopsy to figure exactly what is showing on PET scan in that area. First ENT said throat looks clean and maybe just ulceration.

John ate a popsicle. I cried. Thank you Laura for suggesting that it might be easier. It was and it made his day to day something so yummy! God is good and gives it when you need it most.

Prayer warriors: John is going to have a procedure at St. Luke's next week to insert a soft stent into his esophagus. I don't know much about it yet. We just found out Thursday that he is a candidate and this may help him swallow so we can start chemo again. Please pray it is helpful. Throat scope last week was great! He is feeling good right now: working, exercising, playing w the girls. I feel so blessed.

Update: John is having his procedure tomorrow to either put in a soft stent or dialate his esophagus. They will also do a biopsy of his esophagus if necessary. This is with a new dr in the med center. He gets great press but we have not even met him. We ask for big, big prayers tomorrow. Procedure is at 10:30. Please pray that the procedure is a success and that my ears can understand what it all means.

They just took him back! Feeling groovy!

John is in recovery. went well. did a dilatation. no biopsy needed. praise good. he will need weekly dilation for a while. we should able to go forth w the last bit of chemo soon.

Thanks so much for all the prayers for John.

Hi friends, John is scheduled for another balloon dilation of his esophagus tomorrow. The one last week went well as you know and he can pass liquid now(even some ice cream). I ask for prayers tonight for this procedure as well. I read the last set to him before the procedure and it filled him with joy. He is not that into FB but he actually liked this I could tell.

john had a complication w procedure. he is very ill. poss stroke or metaticised to the brain. I am so scared. please pray as hard as you can.

john refused mri or rather would not be still. we will try tomorrow. they brought me stroke literature so it seems where they are leaning. thanks for everything. we are ok. love.

john is having mri now.

They did mri. no results yet but getting it done it one hurdle crossed.

john did have a mild stroke. no cancer in the brain. excellent prognosis for recovery.

John's cleared for soup tonight. modified barium swallow was good. gonna do again in a few days.john can lift his right leg. progress.

John has been released from stroke team. doing great. rehab at st lukes prob starting tues. second rehab eval monday. he is eating slowly. starting to move right side more and more.

John is doing so well. I am so blessed this father's day for so many reasons. God is so very good. My girls got their vacation to Nederland and my husband is going to be fine. Praise the Lord from whom ALL blessings flow!

John is going to rehab here at st luke's tomorrow. he is walking slowly. his right arm is not moving yet but they still feel hopeful. he is eating small amounts of food. eggs, soup, pancakes! God is good. love Becah

John is in rehab officially. Doing really well. Eating some at every meal. So proud of him and thankful for his progress.

Great day with John and the kids today at St. Luke's He is doing beautifully!

The girls and I are staying home today while John's parents visit. I feel a bit guilty but so tired of driving back and forth from Med center. Catching up on things around this house! John is still doing well.

John is rolling home. (from the hospital)

Okay therapist friends out there...I have to find an out patient OT and PT clinic for John. He is home. Any suggestions? We have United healthcare. Thanks for the help!

Happy 4th of July, Happy Birthday to my love John, my beautiful sissy, my wonderful bff's Julie and Jeannette and happy anniversary to me!!!

Having a pedicure with john on our 7th anniversary!
Prayer warriors, John is doing well. OT & PT 3X a wk. Movement coming along in left arm & slight movement in left fingers. He will have a dilatation of his esophagus on Friday at 10:30. This is the same procedure that the stroke followed. They feel he had a reaction to Demerol. He will have the procedure inpatient to be monitored with different anesthesia. We are confident it will be fine but nervous all the same.

John's procedure is tomorrow. We have to be there a 10:30 and the procedure with be about 2 hours later. Thanks for all the prayers!

John did not have his procedure. He woke up last night with a red hot neck and low grade fever. The doctor said come on in and he was assessed to have cellulitis. He will be in the hospital (St. Luke's) for the weekend on IV antibiotics. His procedure has been rescheduled (tentatively) for Monday. Thanks for your continued prayers.

John is settled at St. Luke's and getting IV antibotics. He will like have his procedure on Monday now and come home Tuesday. Thanks for all the nice notes and texts. We appreciate it!!! Thanks to wonderful neighbors for helping out as well. Love Becah

john's procedure for the dilatation is on for today at 3:30 p.m. He is still in hospital and will received IV antibotics for the next couple of days as well. He is doing well. I ask for prayers the the procedure goes well. Love Becah

john's procedure went great. another dilatation in a week. he be eating enchiladas soon. thanks.

John is home again, home again... jigity jig!!! He looks and feels great!!!!

John is doing well. He has another dilatation on Tuesday at 10:30. Thanks for all the prayers and love.

The dilatation went well. Another in 2 weeks. Happy days!!!

John just went in for the dilatation!!! Prayer time!

The procedure went just fine. Now for PET scan Thursday!!!

PET scan tomorrow at 9:30!! Prayer warriors please rise up!!! Love you all!

Tomorrow is orientation for preschool for Brookie, a throat scope and PET scan results for John. It is a big day and I just now started to feel nervous. We could use some prayer tonight.

no cancer in throat or lymph nodes!!!!!

Thank you to all of you who have prayed and supported us through Facebook on our family's journey through cancer. No journey with cancer is ever over and I will continue to keep you all abreast of John's progress. Today we shout out loud, God is good, he is so good indeed!!!

John has a procedure tomorrow. Minor one due to difficulty swallowing. I feel bad. DR. said he could do Tues but it may be his partner. Receptionist said if we do Wed he can be there for sure. He called me today bc he arrangements to be there for procedure today and we were not there. He was so nice I feel bad. I want all drs working on john to love us therefore take great care of him. Please pray for procedure.

John's procedure went great!!!!!

My 3 year old just said, "mommy did you know michael douglas is going to take the same treatments as daddy?"

John update: He is doing well. Feeling strong. He is still having trouble swallowing. The dilatations last for about 2 weeks and then he is closed again. Tomorrow he will have a soft stent placed in his esophagus. It is a simple procedure, similar to the dilatation. Prayers are really appreciated. Going under always makes me have PTSD!

John's procedure went well. He is having some nasty pain in his neck but hopefully his body will be more used to the stent tomorrow.

Hi all. I am asking for an extra prayer for John this morning. The stent is very painful still and lots of nausea. Talk of admitting him but we are praying that does not happen. Dr. has agreed to do a swallow study first today and see if the stent is placed properly. We have no lbs. to lose so pray that it is resolved soon.

The swallow study was good. Stent in place. Getting new meds. Hopefully time will heal pain.

Thanks for the prayers. I think they really helped John feel better today! I appreciate it!

Today was a rough one all around! Let's try for better tomorrow....deal?

Some sweet prayers for john tonight would be so appreciated. The stent is so very painful!

John is still in pain but today was better overall. If you could keep the prayers coming, they are working.

Okay John bathed the kids tonight and they came out with chocolate from their ice cream sandwiches still on their face. I asked, " did you wash their faces?" "Nah", he says, "I let them bath themselves." So essentially they just got wet.

John is feeling a bit better each day. The stent has been rough but just a bit of progress is hopeful for our emotional well being. Thanks for your prayers. Love BBB & JHi all! John has an appointment with an ENT in med center tomorrow.

Our ENT in Tomball saw a nodule on his vocal cord. She thinks it is due to all the procedures he has had lately but wants us to see someone who can take a closer look just to be on the safe side. Please pray for him.

John is fine. Nodules no biggie! praise God. One more time!

Hi all, Asking for prayers for John today, I am taking him in to be admitted. yesterday was good and today he just feels terrible. Gotta have the stent checked out. BTW, stent and cancer both suck!

We don't know for sure but the stent appears to be obstructed. we are not sure if they will remove or when. hoping to know something soon. please pray for john. this is painful and it is rough on the spirit.

stent procedure today. out in adjusted. we don't know. please stay on your knees friends.

Thanks for the notes of support to all. We are doing well otherwise. The nurses at St. Luke's are awesome at keeping him as comfortable as possible. Our room also has a nice view from the 20th floor, that helps.

John will have his procedure around 6 tonight.

John waiting waiting to go in for procedure now. Relief please, relief!!

John did not have his procedure. The anesthesiologist was not available due to an emergency and he has to have a specific monitored type b/c of the stroke with was caused by a reaction to demerol. It is on for tomorrow at 7:00 a.m.

John is ready to go again. I went home last night and he looks good this morning. I think I just heard the doctor arrive. Thanks for the prayers.

He is in the room now. I think they have started.

It is over! It went great!!!!

They took the old stent out and put new one in. He said the placement was much better this time than last so hopefully it will go better. Praise GOD!

Going to get john. Now you can stop praying for him and pray for me. hehehe. He is better just worried about managing pain ok at home. Nast week was hard.

John update: His pain is at bay. Still some nausea but overall doing much better.

Please continue to pray for John. He is better some days and others are hard. The pain is still way better but other side effects remain. Thank you.

Hello Friends...time for a John W. Butler, Jr....news flash. Things are a bit better in the land of Butler. Less pain = Less pain meds= Less side effects for said meds. Still some pain but managing pretty good. Mostly working 1/2 days. Eating a little every meal. Routine PET scan results tomorrow not worried but prayers appreciated. Love Bec

Going to Lost Pines Resort in the morning. Can't wait!! Much needed. By the way, PET scan was good. Something very slightly light up in right groin (random) but too small to biopsy. Dr. says we will watch it. Thanks for the prayers. Love B

November 22, 2010

john ate a buffet

That is all for now (and I think that is more than enough). I'll be back and I pray John will visit too.

Love,

BecPreview

Blogging for Dummies

2010-11-28T14:32:00.000-08:00

My 83 year old grandmother, GG, was here staying with us last week, more about her later. She has a book called Tai Chi for Dummies which makes me think I need Blogging for Dummies. Does this exist? I am sure it does. The reason I need it you will see if you are reading this post. There is a giant sized picture of my family on the blog that I have no idea how to resize. Sorry for the life sized version of us but this is really about getting to know us, up close and personal, so there you go. Get to go decorate the tree now. Did I mention that I love Christmas?

Love,
Bec

Butler Family Curve Balls

2010-11-28T13:13:00.000-08:00

November 28, 2010

This is the beginning of the Advent season. The Advent season brings lots of bittersweet memories to my daily thoughts this week. This time last year we were trying with desperation to figure out what caused the swollen lymph gland in my husband John's neck. The doctors (there were many including a dentist, GP, ENT and infectious disease specialist) who all insisted it was not cancer. John was too healthy for cancer (whatever that means)! At this time one year ago, we did not know yet what was wrong but I think that maybe we really did know. On December 23, 2009, my husband and the father of our two little girls was diagnosed with Stage 4b head and neck cancer. Thus begin a journey of curve balls for this family of four. A journey of curve balls that I have decided to write about for fear that all the curves in my head after this year will just keep me spinning unless I talk about them. Thus trying to straighten it all out. I will also start the blog by saying that as August 2010, John is cancer free. We are not free of curve balls but we are free of cancer and that has already made this advent season a lot better than last.

Love,

Bec