Friday night report

Tonight Deb was very tired and went to bed a little earlier via the 'normal' routine I described before.

In addition to our cancer adventure, we are also having to see Deb's mom Doris make a move from South Atlanta to the Warner Robins area so Deb's brother Tim can oversee her care instead of Deb. Today Amanda was here much of the day helping plan the move: probably Sunday am. It will be a stressful time for her to make another move at her age. Please pray for her to acclimate well to her new surrounds, Drs.,dentist,room mate,etc.

I talked to Trey this afternoon and he and Katka had been to the Dr. there in Belgium to see when Miss Evelyn might arrive. If she continues to delay her arrival, she may be induced later in the week.

We plan to take Gracie(the RV-10 airplane) to Arkansas on Weds. Packing and planning will begin this weekend. We were blessed to get firm dibs on a one bedroom suite after working our way up the waiting list.

The angels are still very active! Thanks again to all who serve us.

Vern

CONTACT INFORMATION

This blog does not allow a normal email address format. Therefore, please add the normal symbol for the . Remember, no spaces in an email address. We check emails multiple times a day when able.

Vern Darley= vern at mindspring.com

Deb Darley= deb.darley at gmail.com

Chief Angel Cassy Sims= cassysims at gmail.com

++++++++++++++++++++

Our temporary address in Little Rock in case you want to send a card to Deb.

Deb Darley
c/o Markham House Suites
5120 West Markham
Little Rock, AR 72205

Friday Morning

It must have been a dream but this very unusual doctor came for a housecall last night and left some interesting instructions. But, hey, I slept well last night and woke up with a smile this morning. No contact information readily available or I would suggest everyone get a check-up from Dr. U. R. Special.

It's Friday morning and so many of the things I asked you to be praying with me are completed or in the works. Thank you Father God for your provision and you guys for your loving prayer. Vern gave you the tentative schedule. I feel like we have a lot to do probably because I have so little I can do. I can't do that last night running around that gives me comfort. Vern just has to see it all for me.

I am grateful to be getting started but I certainly have butterflies. I have never liked doing anything the first time. Now if I like doing something the first time, I want to do it again and again. But, it's that first time that is really hard for me. Here's to the beginning of an adventure and the belief that God will be with me and you guys will be praying.

Doctor makes surprise house call

Dr. U R Special, a certified specialist, made an emergency house call this evening to check Deb's condition. We were very surprised when the Doctor showed up. She immediately checked Deb's funny bone, gave her an IV that doesn't hurt, and left her with a clean X in case it was needed. Thanks Doc!

Needless to say, Deb was somewhat taken aback by all the personal attention.
We strongly recommend Dr. U R Special!

Thursday evening-NEWS!

First: No Evelyn yet!

Second: We have a tentative schedule for Arkansas subject to change. I reserve the right to update and edit this as it gets fully revealed.
Vern

Weds May 5,2010-Fly to Arkansas

Thurs May 6-Labs am/Back repair pm

Fri May 7-Dr Nair am/ Triple chemo lines installed pm

Sat & Sun 8/9th-chemo cocktail bag 48 hrs

Mon May 10-10-12 days- in the infusion center daily

May 21-24 Growth factor shots

May 25-26 Collect Stem Cells

May 27> Possible discharge for 3-8 weeks

Repeat again at a later date. All subject to change.

+++++++++++++++++++++++++++

We are approved for what is called a tandem transplant,so we get to do it twice. The shots cause the bone marrow to really go into high output on stem cells which overflow into the blood from the marrow.The blood is drawn out the permanent port that Deb has near her right collarbone. A machine similar to a kidney dialysis machine collects out the 20 million stem cells . They are in sets of approx 5 million per dose and are frozen. One set is used for the next transplant back into Deb.The others are kept frozen 'just in case.'

Later, all this is repeated.

Deb is very tired and needs rest.

Thanks again to the angel corps!

Vern

Weds evening-no grandbaby yet.

It's been a quiet productive day. Tonight's routine was basically the same as I described last night. Deb is now settled in bed on her new wedge pillow with Lisa's melodious piano music softly lulling her to sleep.

Today there was communications with Arkansas setting up a future treatment plan. Details,details, details. We do not have a start date yet. It would be best for us if it were at least a week from now so we can complete some of our personal duties.Also, flying weather is lousy between here and there for a few days. I prefer crisp air/blue skies to turbulence and dodging thunderbumpers.

Trey and Katka's due date for Evelyn was today. Katka went to the Doctor and was told 'not yet.' Perhaps soon? Stand by for breaking news!

Thanks again to all the angels working overtime to serve us! You know who you are!

Vern

Wonderful Wednesday Greetings!

Vern has given you the great news we were awaiting. We don't have details but my thinking is that some insurance coverage beats no insurance coverage!! Very quickly my mind started a mental race to make a list of what we have to accomplish before we are "ready to go". I am so happy the Holy Spirit stopped me. I could have missed the sweet time of thankful worship for the Father's wonderful provision. Yes, there are things to do. However I am certain that His list will be the perfect one if I will just listen.

I cannot thank you enough for the love you are giving us. I just cry and cry and cry some more. I love and appreciate you and the amazing ways God is leading you to love us.
May you see the Lord moving in your life today and enjoy that sweet moment of worship that always comes when we see Him. Much love! Deb

Amazing contacts with friends new and old

This blogging has allowed us to renew old friendships and make some new ones. Tonight an old friend called from Australia! Great to hear your voice friend!

It really has impacted us in a significant way. In our busy life Deb and I have discussed at times that we felt that if we disappeared probably no one would miss us. We have long suffered from feelings of rejection and being disconnected in spite of us living hard in our work,church, and hobby lives. Our pastor regularly has told us these are common feelings in society today. We aren't living in Mayberry anymore. Does this make sense? Anyone else ever feel that way?

Anyway, with this unwanted spotlight of this cancer-issue suddenly entering our life and forcing us to slow down and become more vulnerable out of necessity, we've re-discovered a very important thing.

Many folks actually love us! What a gift!

Thanks friends! And thanks for tolerating a renewed desire on my part to live and speak truth openly and with transparency. I suspect it makes some of us, including me, at times queasy and may even seem overdone. Perhaps it is my way of coping with an area that many men have trouble with: the emotional side of life. Ladies, can I hear a hearty amen?

Vern

Our peaceful night routine

As bedtime approached Deb said she was ready for her meds. We have a spreadsheet that we check off meds with a date/time.Otherwise we'd lose control of them.

So, she took her pills, then I helped her apply pain patches on her back where the worst hurts were. These medicated patches are about 5" x 8" and have sticky on them. They provide about 12 hours medication. She also has smaller patches supplying much stronger 72 hour painkillers.

Then, a final trip to the bathroom, getting dressed in her bedclothes, brushing her teeth. They have become super-sensitive and we had to get a milder toothpaste. I suspect that the teeth are subject to the same abuse as her bones by this cancer.

One nightly ritual is a discussion of how to configure the hospital bed for each night. The triangular pillow has started hurting in the small of her back,so we talked over our options and decided to try using 3 normal pillows in a new stack with her knees elevated. She wanted to give it a try even though no position is really comfortable: we try to choose the least worst.

Then we get covers arranged with a blanket she can reach in the dark. A small spill-proof water bottle is placed next to a baggie with the middle-of-the-night and early-morning meds.There is a small LED flashlight clipped to the bed.

When the physical arrangements were settled then we started the iPod with our friend Lisa's soft piano melodies playing classic hymns we love. The lighted clock was scooted into a spot where she could see it. The we shared prayer requests, Deb read a short portion of scripture, and we prayed for each other. A gentle kiss on the forehead, a mutual 'I love you', lights off, and now she's asleeep and I have a few minutes to gather laundry, load the dishwasher,write this blog, and think about what tomorrow will bring.

Overall, the goal is a peaceful, quiet simple existence. Not much excitement. Just about no TV, especially the hard-charging aggressive news folks. Tonight we watched about :30 minutes of the movie Annie. We love simple plots, good vs. evil, and good guys that win. I especially love old musicals while Deb is a shoot-em-up fan. I always thought our tastes were odd: she, the kindly little teacher who likes blood and guts; me, the combat-ready pilot ready to go drop a bomb but having such simple childlike movie and musical tastes and avoiding blood at all costs. Go figure?

Insurance approved out of network coverage today!

The out-of-network treatment plan was verbally approved this afternoon and the scheduler at the Arkansas hospital is working on our next visit. My best guess would be the beginning of next week. Perhaps we'll know tomorrow. Of course our 'blogger' friends will get the news ASAP right here!

Today has been a great day for Deb. She got a lot of things worked out that had been bothering her. Amanda came down and sat with her this afternoon.

Amanda {alias 'AK', or 'Pooh', or 'Manda-Panda' in daddy-talk} {sorry if it's embarrassing} has a round tummy and a baby girl kicking around inside. Due date July.

Our other gal, Katka in Brussels,Belgium is due tomorrow! We can't wait for these two girl cousins to come! You folks that are already grandparents know our excitement.

Deb continues to be overwhelmed with the acts of love shown us.

Thanks friends!

"Sleep, sleep, glorious sleep"

Deb's morning greeting to me! PTL!
Vern

Monday evening: pharmacy meds / friendship meds

I worked today while several angels stayed with Deb. She is very tired tonight and holding on for bedtime. We have hardly had the TV on in weeks. Mostly we sit in the darkened room and talk quietly with occasional phone calls. We have some spreadsheets set up with meds and temperatures so we can take everything on schedule. Flowers and the tree poster I wrote about are directly in Deb's line-of-sight. My great-grandfathers sideboard looks like a pharmacy!

When I got home, a dear one brought us supper and then left. Deb and I made chit-chat about our separate day and then Deb read your comments and postings on this blog. With many tears, she read and re-read your kind loving remarks. Her spirits were lifted so much!

So, because she cherishes you and your kind words so much, and I witness their power to encourage and delight her, I'm asking...no begging you to please continue them. Words have power and I've seen the results! No matter how mundane, please give her a daily greeting. It will do us at least as much good as the medicines.

Thanks friends!

Happy Monday

Good Morning, Dear Ones!

I am starting this week with hopeful anticipation. Will you pray with/for me for these things? Seriously (1) please keep praying that the Lord will heal me by His chosen means.

I don't sleep well. For a number of nights it was because I had the panic "what if" scenerios running in my mind. For the last few nights it has just been being awake...seriously awake. I am rejoicing that it is without the anxiety that accompanied the previous wakefulness; but, (2) I need nighttime sleep. It is the time for the body to heal and repair and I really need it.

I need the insurance company and UAMS to get their contract for me done so I can begin treatment. I am just in a waiting game for them to decide the terms of this out-of-network arrangement.(3) Please pray that they will get this done quickly giving us the best financial terms they have ever extended to anyone.

(4) Since dear Dr. Chuck gave me the antibiotic and I have stopped running a temperature, I have thought of myself as over the pneumonia. However since I still am doing such a poor job of keeping the little red ball afloat in the little breathing exerciser, I know that this is still a prayer concern. Actually during the tests I had in Little Rock the "pulmonary lady" told me that I would not be allowed to proceed with some treatment (sorry I forgot which) until my lung function was significantly better.

(5) Details, details, details...I know that there are so many things that are necessary for us to go to Little Rock for treatment. Please pray that we will become aware of the things that need to be done and have them accomplished in God's perfect manner and time.

(6) Strength and courage for Vern. He is carrying a heavy load with such grace and gentleness toward me. I cannot begin to know what and how he is doing it. He is managing everything with the help of you dear, kind, wonderful friends and siblings in the Lord. We are overwhelmed with your generosity in every way. A new need that Amanda and I have been discussing is how to handle the long treatments in Little Rock. Please pray with us that the Father will make that clear in His timing as well.

Thank you so much for your kindness to us. Last night as I lay awaking I realized that I needed to ask you to pray specifically for these things and my battle with fear. The Father may lay other specific things on your heart to pray for us. I am so grateful that He has this way of spreading needs and prayer to many different hearts.

I know I have filled your morning. Thank you for your love and care for us. Have a wonderful day.

Deb

You have made it such a sweet day!

Vern told me this morning that he had asked you to respond to his post today. I was less than encouraging; but he had already made the post before he told me. I just did not expect you to respond with the dear comments you've made. You have made today so sweet.

We had "before church" visitors who brought a wonderful breakfast casserole and then the comments began. It was as if you each came by for a quick visit. Some days I just feel lonely even with people around me. I know you have had that experience. Today, you made me feel so loved even though you were not physically here. I cannot begin to thank you for your outpouring of love and care.

Vern had such a great idea today. I have had trouble sleeping the last few nights and he gave me such a sweet gift though you. Thank you for the time and encouragement you gave me today. May you have the very best week. Love you. Deb

Invitation to post comments and additions

At the bottom of each post, there is a spot for your comments. We have no idea who/or how many folks are reading this, or if anyone is. It would be helpful and encouraging to know that someone 'out there' is part of this.

If you disagree with a comment, or think we are crazy, say so. Encouraging comments are also welcomed. Your presence is what we seek, not profound words.

Please consider just adding a short comment and your name or initals so we have an idea that someone is 'out there.'Even if it's just this once.

Thanks!

The Sunny Side of Sunday morning

Deb was awake about every hour or so last night in hospital bed across the hall from our master bedroom.She's now napping in the recliner chair. Friends brought us a early morning brunch and shared an encouraging visit and prayed for us. We were both up and dealing with meds at 3:30 am. We place the meds and water in a pouch on her bed rail so she can access pain killer if needed in case she can't wake me in the middle of the night. Her voice is very soft and I tend to awaken and listen at every noise in case she needs me no matter how hard she tries not to awaken me. After 35.5 years of together, I hear her every moan and wiggle.

Deb has told several folks that my blogging tends to the cheerie side of a dark situation. Perhaps so. I'm not intentionally trying to hide my head in the sand or mislead you.

One of the most profound musical lyrics to me is an old 1930's era Carter family tune about "Keep on the Sunny Side of Life." The song acknowledges that there is a dark side of life and a dark perspective, but at the same time, there is a brighter or'sunny side' and that we should 'keep on the sunny side.'I try to do that.

Songwriters: Carter, A P; Garrett, Gary


There's a dark & a troubled side of life
There's a bright, there's a sunny side, too
Tho' we meet with the darkness and strife
The sunny side we also may view

[cho:] Keep on the sunny side, always on the sunny side,
Keep on the sunny side of life
It will help us ev'ry day, it will brighten all the way
If we'll keep on the sunny side of life

The storm and its fury broke today,
Crushing hopes that we cherish so dear;
Clouds and storms will, in time, pass away
The sun again will shine bright and clear.
Let us greet with the song of hope each day
Tho' the moment be cloudy or fair
Let us trust in our Saviour away
Who keepeth everyone in His care

I know folks who dwell on the dark side and it colors their perspective on all things. I like to deal in facts and truth, yet take the positive outlook on them. So, while we are dealing in the early days of a horrible killer disease for which there is no cure, just treatment, I am trying to see that in spite of the dark days ahead as we plunge into the chemo and hard days, there is a brighter day coming after all that.

Deb and I had discussed retirement and how we would live it out. We really had no particular desire to make many changes to our present living arrangements and had no particular answers to how we would approach that season of life. Now that we have this disease to cope with, our next season of life has begun to take shape.

We had planned to have a hangar party this summer to celebrate our 120th birthday about midway between Deb's March 15th and my Oct 16th b-days. You guess what that means??? Hopefully, you can attend whenever we are able to have it. Will you come ?

Old friends visit

Deb had a quiet day and was able to walk a little up and down the hallway with the help of her walker. Her treatment for pneumonia has boosted her mobility significantly.

Vince and Lisa Lewis drove up from Thomasville,Ga for a visit. Lisa and Deb became heart buds about 1963 in the seventh grade. Vince met Deb while Deb was a youth worker at Omega UMC in 1970ish.



Both Vince and Lisa were part of the Dr and Mrs Owens gang ministering at Valdosta State College and Moody AFB in Valdosta. Just like Vern and Deb, Vince and Lisa met and married in the Owens gang as did many other long-term friends of ours. Mrs O was quite a matchmaker!



Vince and Lisa are both musicians. Lisa is a pianist and Vince plays guitar. They have been worship leaders in churches, small groups, and at the Owens's before they were a couple. Vern has always enjoyed singing with them.

The Lewis's daughter Erin is now second-generation friends with our daughter Amanda. It's cool to have friendships continue into the next generations! It's a God-thing!

Today Amanda attended a worldwide Beth Moore event in Atlanta while Erin and husband Johnnie hosted the same event in Detroit. Small world!

It's a very special blessing to have been friends for all these years and to have been a part of the same ministry and now have our kids being friends!

Deb has commented all day how much she wants to write on this blog but she is still unable. Perhaps soon you'll hear more from her.

Blessings all!

Vern

Evening update

Since discovering that pneumonia is present, and starting treatment including antibiotics and a breathing exerciser, Deb had a much more pleasant and active afternoon. She is really trying to breath deeply and not allow the pneumonia to get worse. She's a fighter!

To my untrained eye, she is doing better today than yesterday but Dr Chuck advised us to head to the ER if she worsens or has the occasional fevers intensify.

Thanks again for all the demonstrations of love!

No grand baby yet.

Vern

Morning report-Friday 4/23/2010

Deb was awake much of the night. Anxiety. Mind rehearsing the 'what if's. Possibly the pneumonia meds added to the others.

The new bed configuration was very comfy she said. Morning started out with potty>shower>lift chair>hair drying>breakfast. Is that more than you want to know? Care giving, as I'm finding out is like that. Mostly the ordinary things you do for yourself but but done by someone else because you can't do them yourself.

Various angels flew in leaving in their wake homemade bread and muffins, organic fruit, and some flowers. A handful of cards came which cause great pleasure for Deb. Thanks all!

One friend, a cancer survivor herself, made a special and unusual gift for Deb.It is a delicate colorful beaded bracelet. Each color bead represents a particular kind of cancer. Deb's myeloma is represented by burgundy.



Today is rest. We must not tire Deb out. We have to lick the pneumonia and get her rested for the next trip to Arkansas.

Thanks friends!

Vern

Report from Dr visits today

Pneumonia

Thursday morning update

Deb was up early for meds, breakfast,spit bath,clean clothing,etc. Last evening her pain from the hotel van-in-the-drain-ditch injury caused her to check in with the Arkansas nurse. They were concerned about the possibility of a broken rib since her myeloma is bad on the ribcage in that area and therefore weakened. Also,her difficulty breathing and low-grade fever could be indicative of an onset of pneumonia or shingles. So,around noon we're off to see our local Doc to check these out.

Last night we explored new ways to setup the hospital bed for much more comfort. As you may know, they are typically thin vinyl-lined mattresses. When the electric adjustments are made (raising the head and under the knees for Deb), the padding and sheets have tended to wad up directly under her fractures which has produced some agonizing nights. We utilized a large triangular foam pad that allowed us to keep the head adjustment flat,therefore eliminating the wadding! Probably sounds like a minor thing to most who have never had a fractured spine.

Breakthru yesterday with insurance: Deb's insurance company called us back after 3 days of us trying to contact them. The process of coordinating out of network coverage for Arkansas has begun. If it isn't completed within a few days, we will become persistent contacters! Deb is really eager to plunge into the treatment regimen. She is eager to get a few more back fractures repaired. Somehow life with seven spinal fractures isn't appealing to her (or me!)

Deb's brother Tim came up from Warner Robins to plan the move from Christian City to a care facility down there for Doris, their mother. Deb has been the primary caregiver/financier and can no longer serve in either role. It was a real relief for Deb to pass the torch onto Tim in those roles.

Blessing all!
Vern

This is really from Deb :-)

Hi, guys! I guess it's pretty easy for you to figure out that I haven't been writing much. I want to and then by the time I think I can, I'm so sleepy that my eyes just cross and my brain seems to just go blank. So, here's trying. (My next-door-neighbor just brought over some delicious, warm bread pudding and I feel energized to try.)

First of all I want to tell everyone how grateful I am for everything...the prayers, cards, meals, visits, gifts, comments, etc. I keep asking myself how I can possibly thank you. There is absolutely no way. Please know how often I find myself crying because of your expressions of love and concern.

Vern just told you that we are expecting our first two grandchildren this spring/summer. We were so looking forward to visiting the kids and getting to know these special little girls. Disappointing as this is, I know we will have many years together. While I have moments when I feel somewhat dismayed, I believe that the Father has plans for "good and not for evil to give us a future and a hope".

I have been very exhausted since we returned from Arkansas. Finally, I called Dr. Nair's nurse today because of the mishap on Friday.(Van vs Ditch) Funny, it never occurred to go to the hospital out there. Sure wish I had!!! There are several things that could be problems as results. So, tomorrow I have to the doctor here and get x-ray, check to see that I am not coming down with shingles, and confirm that my lungs are okay. It's funny how "fuzzy brained" I am between the pain meds and the anemia. Please pray that everything is okay.

The second thing is the contract that must be written between United Healthcare and the University of Arkansas. Apparently since UAMS is out of network there are special hoops that we much jump through. We have been asking for this process to begin for almost a week and finally the United Health Care person started the process today. Please pray that this hurry along. The UAMS nurse that I spoke with today said that she has known the process to take over 3 weeks and I really need to start treatment. I keep reminding myself that none of this has taken God by surprise. I just have to have patience and believe that He will get it all together at exactly the right time.

Today was a great day because I got to see my brother as well as spend time with Stephen. Friends from church and school dropped by. I am getting really tired. But, I just wanted you ALL to know how very much I appreciate you.

God's richest blessings.

Love, Deb

First Grandchild due within a week

{Photo by our talented son-in-law Jon Swindall of swindyfilms.com fame!}

Trey, our oldest son, and his wife Katka are expecting their first child, and our first grandchild within the next week or so. The official due date is a week from today.

Trey and Katka live in Brussels, Belgium.

The little one is to be named Evelyn. A name easily translatable was needed and Evelyn is it. Katka's parents live in Prague,CZ.

Here is little Evelyn's ultrasound.



Here's Katka's email to me from today:

I know - exactly a week from today. It seems almost unbelievable! Evelyn is really lively, kicking her tiny feet up my belly, so I hope she wants to come to this world as soon possible. Trey and I cannot wait.

I have been at home since last Monday, resting a lot and also enjoying the sun that we have been having here despite the dreaded cloud from Iceland.

Stephen was really lucky to get on his plane. It was real fun having him over. We all enjoyed the time spent together and I think he managed to squeeze as much as he could into his visit. I guess he is telling you all about it now. :]]


I have been following Debbie's blog closely and am really happy for any step forward she takes. It was real luck to find this centre in Arkansas and it is great to hear that she is such a fighter - everyone says that is the most important thing in any situation like this> not to give up and fight, fight, fight. I am sure she is so grateful for all the support she gets from you and your friends... I wish we could be here with you right now. This bothers Trey a lot - he would so much love to be more involved and helpful in this crisis. If it weren't for Evelyn coming, he would have gotten on the plane with Stephen, at the latest. It is really the worst timing ever. I really need him by my side right now but as soon as we get to grips with Evelyn, he will fly over and I can go to Prague with Evelyn where I can get some help from my parents... I am not sure when we will be able to fly with her..

Please, give my love to Debbie. I hope we can do a little videochat again once she gets some rest at home.

Katka

My paternal grandmother was also named Evelyn. Trey is Vernon Olin Darley,III ,so you might say that my grandmother Evelyn Darley named Trey since she named my father.

What's this got to do with Deb? FIRST GRANDCHILD! ...and we aren't there and may not be able to travel internationally for a while. Our plans had been to spend part of June getting to know Evelyn, then rushing home for our daughter Amanda's first born,also a girl to be name Eliana.

Our replacements! Yeah!

Chief Angel

During our sudden entry into the world of care giving, it has become evident that Deb and I are totally overwhelmed and need a 'director' for our lives. Long-time friend (Vern went to High School with her and husband Jeff) Cassy Sims is the 'Angel-in-charge'.




Every day kind people approach us with a generous offer to feed, sit with, cut grass, do laundry, etc. We have learned to refer them to Cassy .
It has been so helpful to have food coming in so Vern can concentrate on Deb and the necessaries of life, and extra help cleaning and sitting with Deb makes a huge difference. Deb is totally dependent on others for everything.

I've been working as much as possible while back in Peachtree City and the caregivers have allowed me to do so. Fortunately, I'm just 5 minutes away from the house and can get there in a flash.

So,if your heart steers you towards serving Deb in some way, please check in with the Chief Angel, Cassy! If you feel helpless or cannot physically help, then please pray! Prayer is our chief need.

You will recognize Cassy someday in heaven because of the wheelbarrow full of crown-jewels she pushes around with her.

Contact Cassy for food, sitting,etc.

Thanks friends!



Vern

Morning update

Deb had a good night. I'm writing this from her bedside.

This morning she laid in her hospital bed and read some scripture for the two of us. She had trouble focusing on the print which she normally could see plainly. Her voice-normally that of a high school math teacher-was very weak and missing some syllables.

She chose to read Psalm 25 and 26. I asked her which verses spoke to her this morning. She selected Ps 26:3-4 which says "you keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever,for the Lord God is an everlasting rock.

Beside the bed is a dual picture frame with two 8x10s of sepia tone childhood photos of Deb. As she lay here I could see her pix and her. As I studied both I found it remarkable how her features from ages 2-5 are still there. She was a beautiful child and she still is!

Stephen spent the night an made Deb her favorite cheese toast.


Today insurance and banking issues face us.

Blessings all!

References

http://myeloma.uams.edu/

http://www.uams.edu/

http://en.wikipedia.org/wiki/Multiple_myeloma

http://www.leukemia.org/all_page?item_id=7032

http://www.acor.org/mm/

Encouragement from above

Dt. 33:12

"Let the beloved of the Lord rest
secure in Him,
for He shields him (her) all day long,
and the one the Lord loves
rests between His shoulders."


We continue to pray for Deb. She rests between the shoulders of the Lord.
A friend


Do you have any encouragement from the Lord for Deb?

Stephen's visit

Stephen, our mid-twenties son just returned from Brussels, Belgium where he visited Trey and Katka for 2 weeks. This was the last visit Trey and Stephen will have before Trey becomes a father and Stephen becomes an uncle! Little Evelyn is due very soon.

Stephen just made it out of Europe right before the volcanic dust stopped air travel. He will be visiting for a few days and helping us.

Tonight Stephen made us some toasted cheese sandwiches to go with the delicious soup friends brought over. The cheese was hand delivered from Europe and was deeeee-licious!

Thanks son!

The Inspiration Tree

This is the poster that Deb looks at all day long. I mentioned it in a previous post. The name of the poster is Determination.

The caption says 'The harder the conflict, the more glorious the triumph.'

Mail Call !

Mail call is the highlight of many a soldier, sailor, airman, or marine! Add Deb to the list of those eager to hear those words, 'mail call.'

No matter how bad she feels, her countenance brightens up when I bring her the day's cards and notes.

Tonight she teared up as she confessed how negligent she had been over the years as she could and should have sent cards and notes to others in their moments of need. She said she now really understands and appreciates how much they mean to someone hurting.

So far, I've seen so many tears of joy and squeals of delight as she reconnects with old friends and makes new ones.

Just in case you want to send something; our address: find the contacts page and send an email. We will email our address. (think security!)

Rest on the 'day of rest' and a medal deserved

Last night Deb got to the house and we manuevered her into her lift chair for a nap so she could be ready for her hospital bed at 10:15pm. She slept all night (no potty breaks!) until about 9:30 this morning. Her left side was/is really hurting making us wonder about the possibility of more injury from the hotel van bounce I previously described.

After a little cheese toast and watermelon (the breakfast of true champions!), Deb resettled into the lift chair and took another nap. After church let out, a group of friends dropped by for a short visit and prayer for Deb. When I answered the door, there was a beautiful gift basket sitting there full of all sorts of 'distracting' attractions. Later, Deb and I enjoyed a lovely meal some of you provided! Thanks friends!

Deb has an overwhelming sense and verbalization of gratitude. She realized that bitterness and unforgiveness only hurts her, so she has had several prayer times to specifically forgive and pray blessings on those who have hurt her in the past. Amazing women! She's been inspirational to me!

Deb is really undergoing a trial here and in my opinion is really shining! I feel that she is so much stronger than me on the inside. Would I choose that little scraggly little tree hanging onto a desolate rocky crag to motivate me to hang on no matter what? Would I joyfully fast 3 days while doing 15-16 hour days of testing? Would I encourage every being I encounter and ignore my own status? Well folks, that's what Deb is doing!

She said today to our beloved family doctor Chuck that she might not win this battle but she would die fighting if she ultimately lost the battle. That kind of heroism is amazing to me!

They give medals for that kind of stuff, don't they?

Vern

Three steps forward, one step backwards

In a previous post I told you about the transport service provided by the place we stayed. The drivers have all been outstanding in their gentle service, helping load and unload passsengers, dropping us off for groceries, etc. Gentle safe transport...until we met 'him' last night!

Deb had endured much pain and had fasted three days for medical tests, so, leaving the final appointment this week, we called for transport and the gals decided it was time for a real meal for the team and Red Lobster down the street would do just fine.

Each medical area has a little free snacks are which we had survived on most days and nights. Half-cans of soup, a microwave, peanut butter and crackers, and water. So,we really were ready to eat!

Our driver dropped us off and we wiped out a table full of food. We called for pickup and a new (to us) driver soon pulled up. This one was different: we were left to load ourselves up (picture a very pregnant Amanda, and Deb with her walker,and tired old me). Lover boy-the driver was deep into a romantic cell phone call and barely even noticed us. He closed the door, stomped the gas, and promptly dashed across a drain area depression in the parking lot about 6-8" deep. We all went airborne from the bounce, and Deb crashed down into the seat seeming to have lost a big part of the gains she had made in the surgery to begin repairing her spine. So, on our 'D Day', Deb had to go back to sleeping in the pillow-stuffed recliner chair instead of the bed she had used the night before. Bummer!

It is possible that this setback might have produced additional fractures that we will have to get repaired next time we are in Little Rock, which will most likely be in a week and a half or so.

Needless to say, my first duty after helping Deb with the morning support was to scribe a detailed letter for lover-boy's boss.

What's the old saying: it only takes one rotten apple...

Pray that Deb will get over this latest insult and be back on track for increased pain-free mobility so we can concentrate on fighting the cancer.

Speaking of home...we're there!

Remember the Beverly Hillbillies TV show when Jed 'loaded up the family and moved to Beverly; Hills, that is...'? That's what we looked like as Deb, Vern, Amanda and all the stuff needed to support us for a week in Little Rock were loaded into Gracie (The RV-10 plane we built) for the trip home.

It was sure good to get home this afternoon in Gracie. Pulling off the runway and seeing a host of friends waiting to help us unload and gently help Deb out of the right front seat was a wonderful sight. How blessed we are to have such friends! Thank you! I can't help but think that there are 'Lone-Rangers' out there who will not even tell people they are sick. That's my natural flesh-pattern: gut it out alone. How do we survive that way? God created us to be in community and this life-event is really pounding that fact into my headbone! Hope I can always respond in kind with loving support when others encounter their life-events. I guess communication is a part of the package. How can you respond to an unknown need?

We got to the house to find that someone had broken in and stolen all our dirt and unwashed laundry and stashed some fresh chow in the frig! Hope they are blessed many times over! Thanks, angels!

It took 2:17 from liftoff to touchdown. Our ground speed varied from 201 mph to as high as 230 mph thanks to a nice tailwind.

Today we were flying from Little Rock to Tupelo, Ms (Elvis' hometown), to Gadsden, AL, to Carrollton, GA, to Peachtree City's Falcon Field Airport. The drive would have probably been 12-14 hours with the speeds, rest breaks, food,etc. Deb would have needed for such a trip. What a blessing to have Gracie available-thanks Dave and Steve! (partners in Gracie)

Home away from home

There are a number of facilities that provide a 'home away from home' for the patients at UAMS. Facilities need to be close by and very clean. We stayed at the Markham House Suites this week. The staff was wonderful, and a free light breakfast is included. Transport back and forth to the various buildings is available for most of the day. Rates for daily, weekly, and monthly stays are discounted for medical stays. We were told that there are other similar facilities near UAMS but we did not get to check them out.

D day: tentative diagnosis, treatment plan, our decision

D day: tentative diagnosis, treatment plan, our decision, determination

Add dread to the possibilities of testing all week, getting totally exhausted, and finally getting face to face with the doctor, who armed with a 2 inch thick file begins to describe your future quality of life..if any.

That's what we did about noon today!

Dr Bijay Nair, MD, MPH, is Deb's doctor. He reports to the world's number one expert in Multiple Myeloma research and treatment- Dr Bart Barlogie, MD, PhD, who came up from MD Anderson in 1989 to establish this center.

Dr Nair is from India and Amanda immediately hit it off with him when she found out he was from the very town she and Jon had been to when they spent time there helping the people hurt in the tsunami a few years back. Dr Nair had a tear in the corner of his eye while thanking Amanda going there.

Back to the report folder: Dr Nair gave an overview of what we were going to do and proceeded to explain all the reports from each test and what that means to Deb. There are several reports that will not be back until next week including the all-important and exclusive to this center Gene report which will determine the aggressiveness of Deb's case.

Dr Nair confirmed that Deb does indeed have multiple myeloma including seven spine fractures, some damage to her skull, her sternum, and hip bone,plus other spots. He spent 2.5 hours with us in a small room and answered a million or so questions, and finally outlined our potential treatment plan. He gave us much hope for the future and pointed out that many information sources paint a much bleaker outlook for myeloma than are being seen at this center. If our complete diagnosis when complete is as he expects, we would attack this disease here for the next six months, then enter a carefully monitored remission.

There are various treatment philosophies in the medical community he explained. The two main ones are to treat some and watch a while to see what a particular drug does, then try something else and see what it does. The other one which is practiced here is to very aggressively use a combination of drugs which individually are only somewhat effective, but when combined, have a synergistic impact on the disease. Then, dual bone marrow transplants are made to re-establish healthy bone marrow. Then, a rest-of- life monitoring occurs at 3 to 6 month intervals.

The bone marrow transplant is not the old look-for-matching-donors around the planet. Instead, the patient is the donor. How's that??? Take marrow from a sick person, heal the disease with chemo cocktails, then inject the 'sick' marrow back into them? Yep! That's how they do it.

Here are some details we laymen do not know: It is the stem cells which do the work. They are immature basic cells that can become anything the body needs them to become.So, by capturing at least 20 million of these cells and freezing them for future use (about 5 million needed per transplant), there are multiple opportunities to rebuild the marrow with cells that are not subject to the rejection problems that using someone else's might pose. Pretty cool, huh?

So, today any doubts about where we want to be treated vanished. This center is a total solution with total support in our life-and-death battle against this terrible disease. The staff,facility, community, technology, reputation, and our confidence gained in a week spent deep in the bowels of this center give us hope for a future together. Oh,it will certainly be different than we had planned, but it will be good and Deb and I will cherish each moment. We have hope for long term remission, and thank the Lord for leading us here and for his provision for this adventure in faith. Join us in worshiping the true healer into whose hands we are committed.

Regarding determination: Deb has amazed me with her strength in the midst of total physical weakness. She has a poster a friend gave her which shows a determined small tree hanging on and growing in a harsh desolate rocky crag. That is how she is handling this. She is an amazing woman!

My understanding of all this is very elementary and I invite Deb and Amanda to correct or amplify my writing. I really did want to get some news out today for all those supporting us.
Vern

Deb gets some mail

An example of the staff excellence was when my cell phone rang mid day.The fellow on the other end asked if I was Vern Darley. Why? I asked.

He said he worked for the mail department and a package addressed to us in care of the hospital had arrived without any clues about our address here. He had used his computer to chase me down. He held the package for us until today when I picked it up. It was a care package for Deb who really needed a lift after 3 days of fasting and a 15 hour day of testing yesterday.
Thanks friend!

The Facility

About 25 years ago our family lived in North Little Rock for about 4 months while I was training to fly C-130's in the AF Reserves. We really enjoyed our family time here and now here we are all these years later.

We were unaware then of UAMS-University of Arkansas for Medical Research, but we sure are now! Here are some pix of this huge facility. The buildings are all linked with a maze of connecting overhead walkways. Because of the terrain, you might enter one building on the second floor, exit up several floors to the fourth floor of the next building, go up or down a few floors and continue on to the next building.Wow! Wonderful opportunities to get lost are plentiful,especially when you only have 5 minutes to get to the next appointment with wheelchair, supplies, meds,etc. Fortunately, knowing this, the UAMS has a system in place. There is a service where you dial a number, tell where you are,and moments later an angel in blue appears to guide you to the next location.

The people: WONDERFUL!!! Simply put, in our first week, we did not encounter a single bad attitude. We have had many staffers, doctors, nurses note our perplexed faces and not only tell us how to navigate, but actually say 'follow me, I'll take you there.' This has happened repeatedly! Staffers have prayed for us, gotten us snacks, blankets, drinks, made phone and computer inquiries,etc. There is a pervasive attitude of humble servant hood here. Many times we've been greeted by name after our next encounter with staff.

We'll Have Another Test Please

Just a quick update

We stayed relatively on schedule today, and were even able to squeeze in an additional test that was added at the last minute.
This morning we had a brief exam by a doctor at the myeloma clinic, and we were very encouraged. Mom's kidneys are functional great and her calcium level is normal too. We did learn she has a slight heart murmur which is why they ordered an echo.

Dad and I were able to tag team the tests today. I got her started this morning and we joined up for the afternoon. He is handling the evening shift. They are actually still at the hospital finishing up the MRI.

Tomorrow we'll meet with our oncologist for the first time, and learn the results of all these tests.

I'm sure mom and dad will want to update soon, but I wanted to let everyone know today went really well.
Thank you for all your love and support.

She Walked!

Today was longer then yesterday, and tomorrow is going to be even longer. Man...they don't give you a break just because you have cancer.

Mom and I are back in the room. Dad is staying in another room, since he got sick this morning. We have to get ready for the bone marrow biopsy at 7:15am, and Mom's last appointment isn't over until 9pm tomorrow night. Whew...This was her second day of fasting for tests. Tomorrow she has to fast again, and here is her lineup for the day. Hopefully we can stay on schedule a bit better, but I'm beginning to think the schedule if just a suggestion;)


EKG
Bone Marrow Biopsy with sedation
More Lab Work
CT Scan
PET Scan
Full Body MRI
and a meeting with our Doctor

Some of the procedures from today had to be rescheduled because our Kyphoplasty was delayed so long. We waited for over 6.5 hours for the surgery. Apparently their was a spinal emergency that caused all the appointments to be postponed. We were so grateful to get the procedure, and Mom was amazing through all the ups and downs. She has seven fractures in her spine, and they were only able to fix three at a time. Her T8, T9, T11, T12, L1, L2, and L4 are the effected disks. They fixed the worst ones today T12, L1, and L4.
Mom had the most amazing nurses today. One in particular was great, and I snapped a picture of her and Mom in the recovery room. She had twins last July. They were miracle babies, and the doctors said they wouldn't make it. She was on bed rest for over 5 months. Her girls were born perfectly healthy. She spent her whole bed rest praying for her girls, and she is going to be praying for Mom. She pulled some stings, and just gave us a great experience. We all prayed together, and it was so cool to see Amy get mom out of the hospital bed. Mom started on the walker, but then she started walking on her own. Their were people in tears in the recovery area watching mom walk. It gave me goosebumps. What an amazing blessing.
I'm so grateful that she was able to walk. I can't wait for the rest of her vertebrae to be fixed too.

Well we have to get ready for bed, but I wanted to let everyone know that mom walked tonight! Hallelujah!!!

Didn't Go Like We Planned

Today started at 5:40am. We had so much to get together so Mom would be ready for her appointments this morning. She needed to be cleaned up, so we washed her hair in the sink and got her all dolled up to go to the Multiple Myeloma clinic.

After getting her settled in a wheelchair at the hospital we set out for the clinic. It quickly became apparent that the "plan" that Katie and I had worked out for Mom wasn't going to happen. Apparently there were some miss-communications. We had been assigned a volunteer for the day, and her job was to help us navigate the huge complex. Her name was Esther and she was really sweet. It was so nice to have an experienced person to lean on.



We waited in a little room for a while to get our test schedule, and meet with a nurse. It seemed to be taking a long time, so I went out to talk with our volunteer. She had an advanced copy of our schedule, and I convinced her to let me look it over. Then I realized the issue. They didn't have a Kyphoplasty even scheduled for Mom. They also had her bone marrow biopsy and MRI schedule for later in the week, and they weren't under sedation. I found the customer service rep for the clinic and told her that we had some issues. It was all we could do to get Mom to Arkansas, and we weren't going back to Atlanta without stabilizing her spine. She told me to talk to the nurse and insist on what we needed. So that's what I did! We decided to let Mom and Dad go to the lab to begin Mom's blood-work, and I stayed to work things out in scheduling.

It took a long time, and involved some more discussions with the customer service rep- she got involved and pulled some strings to get Mom what she needed. Meanwhile Mom came back to the waiting area of the clinic, and realized that she wasn't going to get the Kyphoplasty today. She hadn't had anything to eat or drink since midnight, and needed to take another pain killer. The nurse didn't want us to give Mom anything until we nailed down the schedule. It wasn't the greatest time for Mom, but we pulled out the Psalms and she focused on Jesus while we sorted everything out.

We had to meet with the insurance folks, so we met with them and then finally started on the testing at 2:30. They have some cans of soup ,peanut butter, and crackers, so we were able to pull together a little lunch before heading to Mom's MRI. She did a great job, which is amazing considering she is very claustrophobic and was in such pain. Then we went to get her pulmonary function test. She didn't do too hot because the spine fractures inhibits her ability to take breath in. Hopefully that will get better soon.



We met some amazing people today, and saw so many multiple myeloma survivors. They were so encouraging, and went out of their way to welcome us newcomers. We had a sharp reminder about how fragile this disease makes you when a lady fell from the shuttle. She cut open her leg, so please pray that doesn't cause her any complications. It was upsetting to see, and I made Mom look away. We also met a young lady that is staying in our hotel. When we left the hospital we were so exhausted and hungry that we decided to drop off our bags at the hotel and grab a quick bite to eat. Mom hasn't been out of the house in ages for something as simple as going to a restaurant, so we decided to give it a try.
Anyway, this young lady that was very pregnant came was in the hotel shuttle. She was heading out to grab a bite too. We started talking and invited her to dinner with us. She said she only had $5 and my Dad said he was treating. So she joined us. It turns out that she is 31 weeks pregnant with twin boys, Nicolas and Jonathan. She started going into labor at 29 weeks, and actually is 3cm dilated and her water broke weeks ago. She is part of an "Angel" program for at-risk pregnancies, and is staying by herself in Little Rock. She is from a town several hours away, and her Mom is taking care of her two year old little girl. The program is paying for her to stay here, since it has the best NICU and they bring her food every other day. The hotel has a breakfast, but this girl doesn't have any money, and the father isn't involved anymore. She is going to stay here until the boys are born. She went to the doctor and is actually losing weight. I couldn't believe that as tired as Mom was she reached out to this girl and invited her to dinner. We made sure to send lots of leftovers home with her, and are going to be checking in with her while we are here. If you think about it please pray that the Lord would continue to protect these little babies, and this sweet girl.

I'm going to post our schedule for tomorrow's tests, so you can have some specific ideas of how to pray.

9:30 Metastatic Bone Survey (Pray she can make it through-one hour of lying flat)
11:00 Meet with social worker
12:00 Kyphoplasty (This is when they are fixing Mom's spine)
2:30 EKG
4:00 Full body MRI (Mom has to be still for 2 hours in the MRI)

All these tests are spread out over multiple buildings throughout the campus. It's going to be a full day, and I know we would appreciate prayers for strength and the grace to get through everything.

We are setting an alarm for 4am, so Mom can eat something and take a pain pill to prepare for the day. She can't have anything for eight hours before her Kyphoplasty. It's a lot to keep up with for sure.

Thanks for your prayers!

Amanda

First Day of Testing

We are heading out to get a bone marrow biopsy and also a full body MRI. We are also scheduled to have the spine strengthening procedure.

We've been reading the Psalms this morning, and this one just seemed really appropriate.

Please keep us in your prayers today, and we'll update when we get back.



O LORD, Deliver My Life


6:1 O LORD, rebuke me not in your anger,

nor discipline me in your wrath.

Be gracious to me, O LORD, for I am languishing;

heal me, O LORD, for my bones are troubled.

My soul also is greatly troubled.

But you, O LORD—how long?



Turn, O LORD, deliver my life;

save me for the sake of your steadfast love.

For in death there is no remembrance of you;

in Sheol who will give you praise?



I am weary with my moaning;

every night I flood my bed with tears;

I drench my couch with my weeping.

My eye wastes away because of grief;

it grows weak because of all my foes.



Depart from me, all you workers of evil,

for the LORD has heard the sound of my weeping.

The LORD has heard my plea;

the LORD accepts my prayer.

All my enemies shall be ashamed and greatly troubled;

they shall turn back and be put to shame in a moment.

We Made it to Little Rock

This is Amanda again...Dad is getting Mom ready for bed.
It was difficult getting Mom ready this morning. We had so many things to remember to pack, and it was scary thinking about loading Mom into the airplane. So we left the house later then we intended, and when we pulled up at the airport it was amazing to see a large group of friends. They had come by to send us off, and we immediately set the plan in motion to get Mom in the plane.

Dad had a little stool, and also folding workbench with multiple guys positioned around and in the plane. They were able to help guide Mom up the ramp and into the plane. It was amazing to see her get into the plane. I think everyone was holding their breath, and I heard several people whispering prayers. Mom settled into the seat, and then we started loading the plane. I can't believe how much we fit into it. We had to bring lots of pillows, luggage, a walker and cane and that just scratches the surface. Dave Hicks led us all in prayer before we took off. It was pretty emotional, and meant so much to have people supporting us.

The flight was shorter then I was anticipating. We had a tailwind out of the east of 10-20 miles, which is unusual. Several times we hit some turbulence, but Dad was able to avoid much of it.

We landed in North Little Rock, and noticed that the airport seemed completely deserted. The hanger we were supposed to store the plane was unmarked, so we just headed to the terminal. We pulled up at the terminal, and didn't see a single person. Just as we opened the doors a guy named Elmo came out of a hanger next to the terminal. He asked if we needed any help. It turns out that he works at the hanger we were looking for. Apparently the airport was hit by a tornado last year, and many of the buildings had to be rebuilt. The hanger didn't have a sign yet. The terminal had a code to get it, and I'm so grateful that Elmo came out when he did because I really needed to use the restroom. Just then our car drove up. Dad had hired a limo, since it was easier for Mom to get in and out than a beatup taxi. The limo driver, Calvin and Elmo helped us get her out of the plane. I stayed inside the plane to support Mom as she was getting up, and Calvin, Dad and Elmo were able to guide her out of the seat and down the wing. It is much harder getting out than climbing into the plane, but those guys were unbelievable. Before we even started to unload Mom she prayed that we would have wisdom, and then as she passed each man she put her hand on their head and blessed them in Jesus name. Mom feels that the Lord sent her some angels, since we didn't see another soul at the airport. They unloaded the plane and we headed to the hotel-- Markham House Suites.

When we saw the room I asked Dad if he requested to be so close to the elevator. He didn't, but we have a great room. We are directly across from the elevator, and one door over from where they serve breakfast. We are also as close as you can get to the shuttle that will take us back and forth for our appointments this week. It couldn't be more ideal. I know that friends have been praying for our stay here, and we can feel it.

Mom and Dad took a little nap, and then Dad and I went for a walk. The area around the hotel is really pretty, and we found a great pizza place to deliver our dinner. It'll be nice to get more settled tomorrow before our orientation at UAMS.

I know that Mom or Dad will want to share their own perspective, but I wanted to let everyone know that we have arrived safely. Just as a side note...the last time we were in Little Rock was in 1985. My dad was in C-130 school, and we spent three months out here. It was such a great summer, and it's kinda special to be back though I wish it were just for a normal visit.


Just as I was finishing this post I took a picture of Mom all settled into her armchair. This hotel has a recliner, which is why we are staying here. Mom is unable to lie flat at the moment, so this was really important. Anyway, I took the picture and then Mom accidentally spilled ice water all over herself. It will be really nice when spilling water isn't a huge ordeal. Let's just say that her entire "bed" is wet, and I'm hearing talk of drying it with a hairdryer. Sharing a one bedroom suite with the folks is going to be interesting. I'm not allowed to turn around, so that's why you guys get to be privy to this too. It's made a little funnier because Mom had taken some meds to help her sleep, so it's a race against the clock to get settled back down before she falls asleep on her walker. We gave Mom dry pillows from our bed, so I'm tracking down some dry ones from housekeeping. It's going to be an adventure; that's for sure.

Vern here...

...barely! This is a very tiring experience! We are so grateful for the food,prayers, calls, visits,etc.

Sunday we plan on leaving from hangar D-30 at Falcon Field at about 1 pm for a 2.5 hour trip to North Little Rock Airport with a planned potty stop at Elvis's old stomping grounds of Tupelo, Ms. We will be flying our RV-10 which we recently finished. (See http://www.vansaircraft.com/public/rv-10int.htm for pix and specs.) My partners and friends have the RV-10 (Gracie) all tuned up and ready to go.{Thanks guys!}

Deb is in pain all the time. She has an assortment of meds which seem to cloud her mind the more they relieve pain. So, she has to chose between clear thinking or more pain relief. Bummer!

Fear of the unknown is real. Just what are we going to be going thru the rest of our lives? Will it hurt? Will Deb loose her beautiful(and natural at age 6o) hair? Can we afford it? Will we be able to enjoy the two grand-daughters now due shortly? More is unknown than known.

We are so hopeful about finding answers this week. Getting Deb's spine fractures treated will be the highlight for us. With her current situation I can care for her: any more fractures and I might not be able to care for her.

So, you've had a glimpse into my pate. What do you think?
Vern

Made it to Friday

Vern and I forgot to change my pain patch until it was over 24 hours overdue. I was wondering why I was feeling so much worse but I had had a busy day and just ascribed it to the increased activity level...WRONG. That mistake made life quite uncomfortable for much too long as we tried to correct the problem. You have heard of learning the hard way...we really did.

We are so grateful for the meals, visits, calls, cards, flowers and gifts. The prayers are so appreciated. We all know that it's the Lord who is in control. It is amazing how many people have family or friends who have successfully battled multiple myelona. It is so encouraging to hear from you. I regret that I am unable to respond to each of you personally. You are blessing me personally and I am so grateful for each expression of your love.

I am just so tired. There are angels who are staying with me daily. I am not able to go to the bathroom consistently. It has been so humbling to accept how much help I really need. These dear ones and all of you are keeping us functioning. I wish I were communicating more but my brain feels a lot like jello. There are so many decisions that must be made and I feel so completely incompetent.

Knowing that I am facing a medical battle we are discussing what would be the best living arrangement for my mother. She is currently in Christian City. My brother lives in Warner Robins and would probably be the better caregiver now.

We have so much paperwork to finish before we get to the University of Arkansas. There is also paperwork that must be filed with the Fayette County Board of Education. Vern says that I am making life hard on him by dropping antecedents for virtually every statement. I think he is just guessing at what I am saying much of the time. Somehow we are making it. I think it's in large measure to Vern's great sense of humor.

Amanda, Vern and I will leave early Sunday afternoon to fly to UAMS in Little Rock. We are soooooo looking forward to that. We have been notified that the doctors plan to do another blood marrow biopsy, a full body scan and BEST OF ALL, stabilize my spine. I know there are a lot of other tests but I am so looking forward to some relief from the back pain that I just cried when she told me.

I am so grateful to the wonderful Lord who is ordering our days and never leaves us. Thank you for permission to ramble. Enjoy every day and LOVE WELL. Deb

Change of Plans

This is Amanda(Deb's daughter), and I'm updating the blog for her. It's been a very long and emotional day, and I want to update everyone on the new plan for her treatment.

I had just arrived at mom's house, and dad slipped out to go to work. The plan was for me to stay with mom until it was time to go to her first chemo treatment at 1pm. My goal was to follow up with the University of Arkansas, since we wanted to have them consult on mom's case. When I sat down mom wanted me to write down all these questions for her oncologist, since we would see him today too.
All the questions were regarding her pain level. They had upped her morphine to 100 and she was still on oxycodone. When I arrived she hadn't taken any of the oxycodone, since it had scared her so much. She wanted to know if it was normal to forget to breath on the pain meds, and if it was normal to start to take a drink and then zone out so she was choking on a mouthful of water. We wrote down everything we could think to asked the doctor, and then I called UAMS.

My plan was to get the info on how to send off Mom's files, so I could request them from the doctor. When I called a really nice lady named Katie answered the phone, and she was just amazingly kind. I caught her as she was just sitting down to work with her first cup of coffee, and we kept talking as she started her second cup. She told me that mom would need to have 3 days of testing in Arkansas followed by a day of meeting with the doctors to review her options. I asked if we could send any of the previous tests, and she said they would need to be redone. Then I filled her in on mom's bone fractures and how she is in so much pain, and traveling would be a real hardship. She asked me why a neurosurgeon hadn't done a vertebroplasty or a kyphoplasty yet.
( I found an animation of vertebroplasty that I found really interesting)I had to ask her what that was...she was just shocked that mom's fractures hadn't been stabilized with cement yet. She couldn't believe they were treating her pain with morphine. I asked her how to get those procedures and she told me we could get it done next week if mom came in for her evaluation.


The first day I heard that mom was really sick I googled multiple myeloma, and saw the great things going on in Arkansas, and then a dear friend told us her cousin had just been treated there and was in remission. Then Jon's(my husband) cousin who works at a cancer center in FL told us we had to go to AR too. We also found out that one of mom's fellow teachers just returned from an evaluation at UAMS, and was really excited about the possibilities. We have been in such survival mode dealing with mom's pain that it didn't seem like a feasible alternative. Each time I go to PTC mom has lost more and more of her ability to move around. If she is on pain killers to numb the pain then her speech is slurred and she can barely function, so then she lowers the dose and can't move. It's a vicious cycle and we haven't even begun to fight the cancer.

Talking with Katie gave me hope. I explained that we had a bone treatment on Thursday, and she had a fever of 102 for several days. Then I told her we were scheduled to begin chemo today at 1pm. She said, "Let me guess they are giving you Velcade, Decadron and Revlimid". Then she said don't start it...just don't start it please. I asked her about insurance, and she took my info personally over to Delores to check the benefits.

I went in to give mom the info from Katie, and she was feeling really panicky. We started praying, and I prayed that God would clearly direct us through the info about insurance. While I was praying Delores called me. She was so sweet, and explained everything step by step to me. We were thrilled to find out that her insurance will cover many portions of the treatment. It is considered out- of -network, so travel and lodging aren't covered. Delores told us that over the next year mom will have to be in Arkansas for at least 3-4 months, and someone will have to be with her at all times. The treatments are all out patient.

After I got off the phone with Delores we called my Dad, and he came to talk with us. They had some questions, so I called Katie again and my parents paster came over to meet with them. I found out that the vertebroplasty will be covered in AR and that it would take several weeks to get it scheduled in Atlanta. They also gave me a recommendation on where to stay that has a recliner, since mom can't sleep in a bed right now. She also assured me that mom would be sedated for the tests, since mom can't lay flat on her back. Katie said that she knows mom has been staged, but they will re-stage her after all these tests. I told her that we haven't found out what stage this is at yet, and again she was shocked. Katie said she was just so glad we had contacted them. So she put us in the first available appointment, and we are going to start the testing next Tuesday at 7:30am.

Many of you know that my dad recently finished building a four seater airplane. I truly believe that it was completed to enable us to fly mom back and forth for treatments. She wouldn't be able to handle the car ride, and going through an airline would be so traumatic. It's going to be rough, and we'll need someone to help us get her in and out of the plane, but it's such a blessing to have a pilot for a father. I'm planning on going with them as we check out this new chapter in mom's journey. Please pray for beautiful weather, so it's not an issue to get to and from AR.
Katie overnighted us a packet with info from UAMS, so we'll know more tomorrow.

We had such a full day, and I'm sure my mom will post a blog when she feels better.
Thank you for all your prayers and support. We are so very grateful.

Easter Evening

I hope you have had a great weekend. Amanda and Jon came for lunch. Vern and I got to visit with Trey and Katka via skype. We have had phone visits this weekend with so many friends and family. We have been very loved. But, I think I need to go back and fill in some gaps regarding what happened on Thursday through Saturday since I was so mentally "out-of-it". Friday was virtually a "lost day". I really had a hard time with the bone-strengthening medication that I took on Thursday. I couldn't stay focused at all. Saturday was not much better brain-wise; but I didn't have fever and chills. Saturday's big problem was resolving an issue that comes with pain med use. God provided hardware and software to ease the problem. I just have to be careful to use a great fiber consistently.

The doctor's office keeps calling to tell me to "drink, drink, drink". I think I am drinking a lot but clearly that's one of the other things I may not be in reality about. I have to devise a better plan for tracking fluid consumption. (It's hard to drink when you are asleep.)

I'm sleepy right now. It seems that I am sleepy so much of the time. I hope you will forgive crazy mixed up stuff I may write. I am so grateful to the people who are staying with me and providing meals and flowers and wonderful cards and notes. The big treat for tomorrow is that Jessica is coming to my house to cut my hair. She is a brave woman. We are not sure how it's going to work out but if anyone can do it she can. She is awesome. I am blessed with some of the most wonderful friends in the world. Some of them I know and some I don't know yet but in God's wonderful plan we are going to be great friends for a long time. My collab teacher, Eunice, told me that her mother taught her that God brings friends into our live for a reason, a season, or a lifetime. What an amazing insight!! I appreciate each of you for your kindness to our family. Sleep tight and have a wonderful tomorrow! Much love! Deb

What a difference a day makes!!

Friday was an unexpectedly bad day. When we read the possible side effects of the bone-strengthen medication that I took through the port on Thursday, it did mention flu-like symptoms. I awoke about 4:30 am on Friday morning with fever and chills that lingered thru the entire morning. The afternoon brought some improvements.

Dancing on the inside - Too tired on the outside

Diagnosis Day :-)))))))))))))
Vern, Amanda, and I went to Dr. Carr's office for an 11:20 appointment and it was GOOD!!! Amanda will give you more details. You have to wade through all my emotional stuff before I let her have the computer to tell you the good stuff.

This morning was a killer as far as pain was concerned. I dismayed that I would even make it there. I had 2 morphine patches for pain and 2 percocet and was still unable to stand on my on. When we got to the doctor's office one technician said that they would access the port for everything they needed and another proceded to take bood through the vein in my left arm despite protest. I was just too close to the edge with the pain to protest much. Oh, yeah, she bruised me also. But that is in the rearview mirror. Later they did give me a bone strenghtening treatment through the port. I am a shorty and the recliners in the chemo-room were made for big boys. Fortunately it was only 20 minutes today and that gives me until Tuesday to figure out how to adjust it for a longer session. The people were wonderful, but Vern had to come into the "chemo-room" room to get me up and then we did this tiring little shuffle dance to get me to the car. Exhausted...Thrilled with the great diagnosis almost so overcome by the pain to even get to rejoice the wonderful news. Now for more great details from angel Amanda...

Mom was crying in pain when I came in the house this morning. It is so hard to see her like that. We got her settled, and Dad left for work for a little while. It's finally warming up in Georgia, and Mom was worried that her legs haven't been shaved in four months. She wanted to wear capri pants, but first we had to deal with the leg hair. We set up shop and I shaved her legs while she sat in the recliner. Then we arranged for her very special hair stylist to come and cut her hair on Monday. She is also going to bring some dry shampoo. Grooming with a fractured back becomes difficult, but it's still important to us ladies.

Dad came in around 10:30 and we started the journey to the doctor. It was really an ordeal. I feel so bad everytime my mom has to leave the house. We made it to the doctor around 11:15 and they took mom back to start the blood work. Dad and I could see them taking her blood, and they made her weigh herself. It was so painful-- they kept asking mom to take her hands of the wall so they could get her true weight, but she needed to support her spine. Finally she let go for a second and they let her come back to see us. She is down 4 lbs since last Thursday, which is just another symptom of this type of cancer. They took mom back and only were going to allow one family member to go in with her. I think they could see how determined I was, so I went into the little exam room with them. It was tight between the three of us, and my expanding belly. But we all wanted to be together to hear what the doctor had to say. We got in the room, and in walked a nurse to access Mom's port for the first time. The doctor kept sticking his head in the room, but the nurse was taking her time. She was really sweet and taught us all about the "Huber" needle that will be accessing Mom's port. We decided that we need to name the port, so we are taking ideas. Mom is calling it "storm" right now...you know as they say "any port in the storm".

Dr. Carr came in and told us we had really good news. He told us that she does have Multiple Myeloma, and that it is very responsive to treatment. She is starting chemo on Tuesday. She is going to go twice a week for two weeks, and then take a week off. She'll also have some daily medicine to take for three weeks and then take a week off. We are so grateful that this is a new protocol, and it isn't really "chemo". So she isn't going to have all the normal negative side effects... Mom's should keep her beautiful hair. The plan is to be treated for three - four months, and then to have a autologous bone marrow transplant. They will take bone marrow from her port, and then give her a heavy dose of chemo in the hospital to kill her bone marrow before returning her good harvested marrow back. She will have a long fight but the doctor gave us a lot of hope that she will have many good years to be with us.

Dancing in the street inside my brain

Great news at the doctors. Had first bone strengthening treatment- Zometa and I am exhausted. I'm going to take a nap, and will post more info later. Rejoice in the Lord.