KEVIN

I mentioned in another post that Kevin was a big help to me.  I was fretting about how to put the hospital bed in our bedroom and was planning to take our bed down to store it. I asked Stella if she had room in her storage closet for our bed and mattress. Kevin suggested we put the hospital bed in our den/study where we have our computers and the high-def TV that Stella bought Neal for his birthday. 

Stella helped me draw a diagram showing where to situate the furniture. Sunday afternoon, Kevin and his sons, John and Michael, moved the furniture out of the den and arranged the remaining pieces to accommodate the hospital bed.  Colleen, Kevin’s wife, helped, too.  She and Jeaneal bought linens - extra long twin sheets. Colleen was there to receive the hospital bed when it arrived Monday morning. Stella, Kevin, and I were at the hospital waiting for the ambulance to transport Neal home.

After Neal came home, Stella and I had a baby monitor in the den with receivers in the bedroom and living room. Kevin bought a wireless doorbell and taped it within reach to Neal’s bedside table with the receiver in the kitchen.  Neal could ring the doorbell when he needed or wanted anything. He was never left alone for long, but he could ring the doorbell (“cuckoo”) whenever he needed us. 

Kevin showed Stella and me how to change Neal's linens with a minimum of turns. He suggested that we have as many layers as possible between Neal and the air mattress. He put a draw sheet under the fitted sheet and pulled it as tight as possible, then another draw sheet over the fitted sheet, next a waterproof flannel pad, a chux (disposable paper pad with waterproof liner), and finally a pillowcase next to Neal's skin. He explained that there was no need for anything more than that.  

When Neal came home from the hospital, his skin was broken down and the possibility of a bedsore was imminent. Kevin applied a mixture of antibiotic, vitamin D, and moisture barrier creams to the area and within several days the skin was healed up. Neal was catheterized and Kevin taught us how to drain the catheter bag and measure the urine. I've probably forgotten so many other things that he taught us.

Kevin and Colleen and family were here from Christmas Eve until New Year's Day. During that time, he and Colleen stayed several nights with Neal while Stella and I stayed in her condo (she has a condo in our same building) for some much needed rest.

THAT HAPPY DAY WHEN NEAL CAME HOME, DECEMBER 26

FROM OUR ELDER BRUCE CLARK: Ruby, I know this is not the Christmas you would have planned. You have been on my mind all day. I've been praying for peace for you & now I know why. May you have the peace that only Christ can give. You'll never know what your emails have meant to me. Your faith & trust in the Lord has been nothing short of beautiful. They have been a blessing to me & I suspect to many others. You can reach me ANYTIME if you need me. Our crew here just had prayer for you. I'll talk later. Bruce (& Kayren) --------- “There is none like the God of Israel who rides the heavens to your help, And through the skies in His majesty. The eternal God is a dwelling place, And underneath are the everlasting arms; And He drove out the enemy before you, And said, “Destroy!”” Deuteronomy 33:26-27------- NEAL HAD A WONDERFUL TRANSITION FROM HOSPITAL TO HOME ON MONDAY. WE SET UP HIS BED IN OUR DEN/STUDY SO HE CAN DIRECT ME AS I WORK ON THE COMPUTER. COVENANT HOSPICE HAS BEEN WONDERFUL. NEAL IS SO HAPPY TO BE AT HOME AND I’M BLISSFUL. GOD HAS BEEN SO GRACIOUS TO US – GIVING US STRENGTH AND PEACE MOMENT BY MOMENT. THANK YOU SO MUCH FOR YOUR PRAYERS. WE FEEL WE’RE SURROUNDED BY GOD’S GRACE AND LOVE.

OUR CHILDREN

December 24, 2011 Kevin, Neal's son, and his family came and stayed in the Navy Lodge. He is a retired Navy nurse and was so much help to me during this time. Jeaneal, Neal's daughter, came and brought her dog Roxie and stayed just up the street in a local hotel. My daughter,Shirley, lives in Mobile so she was able to come and stay with Neal. My son, Gary, lives in Houston and he was able to come, too. Neal and I have been married for 38 years and all of our children and grandchildren love and respect each other. December 25, 2011 Dear Children, Up until yesterday, Dad was in a drug fog. Yesterday, he was very alert and his mind was clear. In the afternoon, he told me he was going to refuse all treatment and he wanted to go home. We had an appointment with Hospice this afternoon. They will send a hospital bed to the condo tomorrow morning between 9:30 and 10:30. We will transport Dad home by ambulance. He is very happy with his decision and I am supporting him in this decision. “When peace like a river attendeth my soul, When sorrows like sea billows roll. Whatever my lot Thou has caused me to say, It is well, it is well with my soul.” --

DECEMBER 24, 2011

December 24, 2011 Yesterday, the Neurologist ordered for Neal’s blood pressure to be taken in different positions. My sister Stella was there. The EEG with camera recorded the events. He did fine with everything until he got out of bed. He stood for perhaps 90 seconds and then the “seizure” started. Dr. Myers says it’s not seizures. His blood pressure drops when he stands up and that causes him to have a response. I’m not sure what the next step is but we are thankful to the Lord that he’s not having seizures. A Foley catheter was inserted and they measured seven liters of urine. Neal doesn’t have his round belly anymore. Our daughter, Shirley, spent the night with him and when the doctor (I don’t know which one – he has many doctors) came in this morning and she reported that to him, he said, “That’s impossible!” Shirley said he’s alert – asked for a mirror to see his elbow and wanted oatmeal for breakfast

EMAIL TO CHILDREN

December 22, 2011 This is a recap of our day with Dad: He ate a good breakfast but vomited it up. The nurse gave him phenergan for nausea and he had a good rest. Since he’s not taking any fluids but small sips of water, he is receiving fluids intravenously. He has staph infection in his elbow. The doctor lanced the abscess last night and he’s receiving antibiotics intravenously. Dr. Wade stopped by and looked at his elbow and said it looked better today. Nurse Chloe discovered he had thrush in his mouth and throat and the doctor ordered Nistatin to be swabbed four times daily. He had a seizure at 1:35 this morning. (An EEG with camera was set up in his room.) The EEG machine registered the seizure. I talked with Dr. Myers on the phone and she said the brain wave activity was not typical for seizures. The typical pattern for seizures is spikes up and down. With Dad’s the line is flat. She’s going to leave the monitor in the room for another night. She said, “We need to know what we’re dealing with.” The oncologist, Dr. Yazan Alsayed, who is an associate of Dr. Sunnenberg, came. He said that Dad wouldn’t be a good candidate for chemo because of his age and physical condition. The dose required for lymphoma would be too much for his system. He said they can treat with steroids and a drug that fights cancer cells. He said a doctor from the radiation oncology department would see Dad this afternoon. Dr. Rod Krentel, radiation oncologist, came by and said radiation is an option. The standard for lymphoma is six weeks, five days a week for 15 minutes. Dad will have radiation to the whole brain for four weeks and to the area where the lymphoma is for two weeks. He wants to wait until the staples are out and the wound is healed – probably two to three weeks – and then make an appointment to discuss radiation. That will allow Dad to gain some strength. That’s good because he is very weak. When Dad leaves the hospital, he will go to the Haven to begin the process of rehab and physical therapy. And that was our day today. “Praise God from Whom all blessings flow. Praise Him all creatures here below. Praise Him above ye heavenly hosts. Praise Father, Son, and Holy Ghost.”

MCILWAIN PRAYER CHAIN

December 20, 2011 Dr. Wang (neurosurgeon) and Dr. Myers (neurologist) visited Neal today. His EEG showed some epilepsy type changes. Dr. Myers specialty is epilepsy so she’s familiar with the newer meds. Neal will stay a couple extra days at Sacred Heart Hospital so the doctors can monitor his medications. He’s getting wonderful treatment here. The nurses are just a call button away. He has a quiet room at the end of the hall with a little sitting area before you enter the room. We knew the surgery involved several risks – one of which is seizures. We’re asking for no visitors now as the doctors try to regulate his medications. We love our McIlwain Church family and are so glad that God led us to a Church who has embraced us and loved us.

This is Neal’s favorite poem, by John Oxenham
“Whom I Do Believe”
“ Not what, but Whom I do believe
That in my darkest hour of need
Hath comfort that no mortal creed
To mortal man may give.
Not what, but Whom!
For Christ is more than all the creeds
That His full life of gentle deeds
Shall all the creeds outlive.
Not what I do believe, but Whom!
Who walks beside me in the gloom?
Who shares my burden wearisome?
Who all the dim way doth illume
And bid me look beyond the tomb,
The larger life to Live?
Not what I do believe, but Whom!
Not what, but Whom!”

TO GOD BE THE GLORY!

ANOTHER SEIZURE

December 19, 2011

Dad had another seizure this morning. The neurologist will look at his chart and adjust the Meds. Dr. Wang approved the request to have him go to the Haven rehab center. He shaved and brushed his teeth and was in the bathroom when he had it. Fortunately, a big brawny male nurse was standing by and laid him on the floor. I heard him say that it wasn’t violent and wasn’t a grand mal and lasted about 20 seconds. He did lose consciousness. They put him in the bed. He’s now recovered and looking at TV. I will wait to see what the neurologist says.

STELLA'S NOTES: Around 2:30, the EEG tech came. Ruby and I left to go sit in the waiting room. Ruby felt that she needed to see if EEG was completed. Ruby met Nurse Debbie who was going to check on him. When they got there, Neal had gotten out of bed by himself and was on the way to the bathroom. They put him in a chair. Ruby came back for me. He looks so pale, so weak, so lost. Nurse Debbie helped us to get him in bed. The TV remote continues to be a continuous battle for him. He's constantly going off the channel. Volume control too difficult to process.

Dr. Wang came. Confusion could be from the medications or surgery.

FROM NOW ON, STELLA AND I WILL BE STAYING WITH HIM AT NIGHT.

SEIZURE - EMAILS TO CHILDREN & MY BIBLE STUDY GROUP

December 18, 2011

Dear Children,
Dad had a seizure this morning. He was in the wheelchair ready to go home and as he got into the hall outside his room, he had the seizure. Praising God because it happened in the hospital and not on the way home. It lasted about five seconds. He didn’t lose consciousness. The nurse was there telling him goodbye. She got him into bed and called the doctor who prescribed anti-seizure medicine (Dilantin). He is taking the med IV. It will take about an hour. Then he will have a CT of the brain. We knew this was a risk of the procedure. He is still lucid and coherent.

The doctor looked at the cat-scan and said there was no change from the last one. That is a definite praise!

(I'm in a Beth Moore Bible Study Group. We pray for one another's needs.)

Dear Ladies,
I've put in a request for Neal to go to The Haven for rehab in order to strengthen him. The doctor wants him to walk 30 minutes every day - but I think not all at once. Please pray that the doctor will see fit to send him there. Neal agrees that he needs therapy. He's still aware of everything and his speech isn't slurred. He's coherent and lucid. The seizure took a lot out of him today. I praise the Lord for you.
Love,
Ruby

Dear Children,
Dad ate a good lunch at 2:00. Broccoli, mashed potatoes, and a little bit of grilled chicken. Lisa Looper dropped by and she had a nice visit with Dad. He talked and joked with her.
Dad has had all his tests- brain, thoracic, abdomen scan, and lumbar puncture. He said they drew 2ccs of spinal fluid. Don't know when we'll get the results back. Biopsy will take 1-2 weeks. But results of scan and spinal fluid should be sooner.
Stella and I will stay until after he has supper and then go home.
Dad is very lucid and coherent.
Love, Mom

THE BIOPSY - MCILWAIN'S EMAIL PRAYER CHAIN

December 16, 2011 We had to report to Sacred Heart Hospital at five AM and our Elder Bruce Clark and Pastor Rob were already there. Rob prayed such a glorious prayer. While Dad was having his MRI, I sat across the hall in the waiting room. A lady's voice came over the loudspeaker and said we will now have our devotion of the day. She read Psalm 100 and other selected Scripture and then prayed for staff, doctors, patients, and visitors. It was such an uplifting experience. "Make a joyful noise to the Lord, all the Earth! Serve the Lord with gladness! Come into his presence with singing! Know that the Lord, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name!" They put sticky lifesavers on his head so that Dr. Wang would know where to insert the needle.
McIlwain's Prayer Chain e-mail: Neal is resting comfortably in ICU where he will be tonight and probably tomorrow night. Dr. Wang made three passes in the brain. First was inconclusive. Second confirmed abnormality. Third sent to pathologist. Tomorrow he will have full body scan and lumbar puncture. The goal is to get a good sample to have a conclusive sample. It may be more than a week to get results from pathologist for cells taken today. We covet your prayers for good samples. We are so grateful for the prayers of our McIlwain Church Family and appreciate your love and support during this difficult time. We rest in knowing that God is in control and He doeth all things well. At this time, we are requesting that he have no visitors; we know you understand.

Dear Catherine & Don,
From recovery Neal was sent to Surgery ICU. We got to visit him there (Stella, Shirley, and I). He was coherent and alert. We went back at 2:45 and at 3:30 he said see you tomorrow. We knew that was our clue to leave. Stella and I will go to see him at 10:30 in the morning. He's doing well. I forwarded you the e-mail from our Church's prayer chain which goes to all the members.
Love,
Ruby

WHEELCHAIR

December 14, 2011

Dear Catherine,
Thanks so much for mentioning the wheelchair. There are two stored on the seventh floor. Aaron met me and let me have the pick of the two. I picked the one that I thought was right for Neal. Dr. Wang's nurse said that he would like to have Neal checked by an occupational therapist somewhere down the line to assess his abilities.
Love,
Ruby

Dear Children,
We have a wheelchair in the Condo that Dad can use when we bring him back from the hospital. Dad had lunch and took a nap. We're going to bed early tonight.

December 15, 2011
Dad had a hard time this morning getting to the bathroom. He had to sit on the end of the bed with my foot propped against his to keep him from sliding to the floor. He couldn't get up and he couldn't get in the bed. He finally gathered strength to walk to the bathroom. He ate a good breakfast. He tried to get up and brush his teeth and shave but he's exhausted. He dozed off on the couch in the den. Dad is really weak today.

NEAL'S MAC

December 14, 2011
Dear Children,
Dad was having problems with his computer - he couldn't get online and the the computer was not recognizing the printer. An elder from our church, Mike Dieckmann, who is the University of West Florida's computer guru was coming tonight to help us. Dad woke at three this morning and by the time I woke at four he had it all fixed! That is a definite praise!
Love,
Mom

NEAL'S FALL

DECEMBER 12, 2011, 1:28 PM

Dad had a fall in the hall just now. I had him scoot to the bed and he’s now safe in bed with his pajamas on. I’m OK, too. We’re going to take a nap.

4:18 PM
He’s in the den now and walked here on his own. We’re watching Judge Judy. I think he overdid it. I was afraid to leave him at home, so took him with us to drop off his car and go to the bank. When he got back, he was very weak. Rick the doorman helped him to get back to our condo and sat him in the rolling chair at his desk. After he caught his breath, we had lunch – chicken and dumplings. He ate a nice lunch. Had two glasses of wine. I told him he should drop the wine for now and he agreed. His blood pressure dropped. His blood pressure is 92/44. He’s lucid and comprehending things well.

TEXTS AND EMAILS TO THE CHILDREN

December 9, 2011.
We had an hours worth of paperwork at Dr. Wang's office yesterday. The nurse said we would have a similar amount today. We're finished and at home. EKG was fine. We won't hear from bloodwork. I'm fine. Have my weepy moments but there are a lot of prayers on Dad's and my behalf. We are carried along by the prayers of so many people. God is going to help us through this no matter the outcome. Dad is very Peaceful.

December 10, 2011. All is OK. Dad just woke up. Dad is very quiet. I'm doing laundry. He helped me make up the bed but it was a struggle for him. I'm going to fix him breakfast.

Dad had a good day today. Pastor Rob Looper came and visited him this morning and stayed about an hour. Dad brought in the Mayflower model to show him. He's fuzzy on days. Everything happened yesterday. Rob says he's going to take him to lunch next week if he's up to it. We had lunch - beef stew - and took a nap. We're going next door to Catherine and Don's for a glass of wine.

December 11, 2011. Dad just woke up. I'm going to fix him some oatmeal pancakes.

E-MAIL TO CHILDREN, DECEMBER 9, 2011

Dear Children,
The emergency room doctor said the prednisone would decrease the swelling in the brain and that he would be able to communicate again without searching for words. Apparently, the prednisone is working because he's laughing and talking. We're going to have lunch and take a nap and then go to our pre-op appointment. Lisa will go with us again. Praise God from whom all blessings flow.
Love,
Mom

E-MAIL FROM GARY CUMBERLAND, PATHOLOGIST & GOOD FRIEND

Ruby, I received your email and wanted to give you some of my thoughts on Neal and his diagnosis. First of all, if you are going to have a lesion in the brain, lymphoma would be my choice for several reasons. First, neurosurgeons do not operate on them other than biopsy, and second many forms of lymphoma are very sensitive to chemotherapy and or radiation. If the lymphoma diagnosis is confirmed at biopsy, be sure that you request Dr. Tom Sunnenberg as your oncologist.
Lymphomas do not usually occur in one place but tend to be present in multiple locations in lymph nodes both above and below the diaphragm, so if the diagnosis is lymphoma, they will want to do xrays to see how diffuse the cells are so don't let that scare you.
I will be glad to be with you on the day of surgery and help interpret what is going on. There will probably be a delay in the diagnosis because the pathologists will have to do a bunch of studies on the tumor cells to allow the oncologist to use the best course of medicines. A complete cure is possible and that is what we all will be praying for.

APPOINTMENT WITH DR. WANG, NEUROSURGEON, DECEMBER 8, 2011

(I was exhausted and didn't trust myself to remember anything about the appointment. So I asked our pastor's wife, Lisa Looper, who is a nurse to meet us at Dr. Wang's office. I know this was ordained by God because she is a patient advocate. I told her to put on her best clinical face.)

Saturday, December 10

Dr. Wang reviewed the CT and MRI and he said they showed two lesions on the frontal lobe of the brain, the right being smaller, the left larger. The most likely diagnosis is lymphoma. The only way to determine this for certain is to perform a needle biopsy where cells from the lesion can be examined. Dr. Wang explained that he would be able to give a preliminary diagnosis the day of the needle biopsy but the cells taken would have to be sent to pathology for examination to ensure a proper diagnosis.

If the lesions are lymphoma, treatment would be steroids, chemotherapy and possibly radiation. Resection, or removal of the lesions would not be an option because of where they are in the brain.

We are to report to Sacred Heart Outpatient Surgery at 5AM Friday, where a needle biopsy will be performed. Neal will have general anesthesia.

We know God is Sovereign in all things and we are in his hands – we wouldn’t want to be anyplace else at this time.

TEXTS TO THE CHILDREN

I don't think we'll hear anything from the neurologist tomorrow. I think he'll order a biopsy. I'll keep you posted. After watching Wheel of Fortune, we're going to bed and watch a movie. Dad can still understand the TV just can't find the words he wants to say. With the prednisone the doctor said the swelling in the would go down and he would have a honeymoon period for about a week - a feeling of euphoria and would be able to find the words.

THAT AWFUL DAY

December 8, 2011
SAD NEWS
Dear Friends and Family,
Please forgive this group e-mail.
I was in New York to celebrate my sister Stella’s birthday over the weekend. When Neal picked me up at the airport Monday night, he was very unsteady on his feet. I called him several times when I was in New York and he couldn’t think of words to express what he was saying. We just laughed it off and blamed it on him not having his morning coffee. Yesterday, his symptoms became decidedly worse – dragging his feet and couldn’t call up words that he uses every day. I thought he’d had a TIA and we spent the morning at the Naval hospital where they did a Cat-Scan and MRI of his brain The Cat-Scan showed an area of swelling in his brain, probably fluid. The doctor prescribed prednisone for the swelling and said his symptoms should abate for about seven days. The MRI was inconclusive. They will have to do a biopsy to determine the type of cancer he has. The doctor said he had seven small lesions and one large one in the frontal region. We have an appointment with the neurosurgeon tomorrow morning at 9:45. Neal says he’s not sad or mad – he’s at peace. The only symptoms he has is not being to call up words and being unsteady on his feet. Other than that, he is the same Neal you all know and love. I know you’ll be praying for us.


By Wednesday morning, he was dragging his feet and couldn’t work the remote.

TEXTS TO THE CHILDREN

December 6, 2011. Dad was unsteady on his feet last night when he picked me up at the airport. I think it's his blood pressure but he won't go to the doctor. His blood pressure is 79/48. He'll go when he gets sick enough. He's on blood pressure medications.

December 7, 2011. Stella (my sister) is coming tomorrow.

December 8, 2011. He told the nurse he had a stroke on Friday. Vital signs good. Strength in arms and legs good. No sign of stroke except aphasia. They're going to do a catscan. He's very alert and coherent. He's joking with the nurses. The doctor told him the Cat-scan showed an area of swelling in his brain, probably fluid. She let him see his cat-scan (He was a radiologist). She said that it would be one of two diagnoses: glioblastoma or lymphoma of the central nervous system. They will do an MRI.