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
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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
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
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