Wednesday, February 28, 2007

Wednesday February 28, 2007 2:30PM

I just sent the new CT scan findings to Katy’s doctor at UVA. We talked about the pain level that Katy is experiencing and the conclusion of her doctor in Charlottesville is that her gall bladder should come out. She has stated that she is willing to show the evidence that Katy’s gall bladder has been problematic since they admitted her at UVA last November. Since the condition of the gall bladder has not improved by now, it is her recommendation to remove it.
As you can imagine, we need wisdom and help that only God can give. I am about to contact Katy’s surgeon here to discuss this new development. I have had several hours of sleep and feel refreshed enough to continue this effort. Thank you for your prayers.

Comments:
  1. Karen Tillman Says:

    Hey Dawn,

    Something you probably already know, but point to remember. Be sure they give her DDAVP prior to surgery, and that they have platelets on standby. You would probably need to contact someone at NIH to know how soon before the surgircal procedure that DDAVP should be given if your surgeon doesn’t already know. Take care and give Katy a BIG hug for me.
    Love
    Karen Tillman

  2. Doris Harriff Says:

    You are all in my prayers! I have often wondered why they didn’t remove her gall bladder before when that was the diagnosis at that time. Thinking about the pain Katy might have been spared!

  3. Heather Kirkwood Says:

    Hey Dawn,
    Hang in there. You guys have been on my mind all day. One other thing about the DDAVP - it only works for about 30 percent of HPS’ers so make sure those platelets are ready! Actually, when I’ve had something done that I know is going to involve a LOT of bleeding, I just get the platelets from the beginning. I usually heal better. But, you should probably talk to a hemotologist about what is best in this situation. (I hate giving any kind of medical advice, but for us, this bleeding thing is a big deal.) I know you’re probably already on top of that - but I’ll throw it out there anyway just to be on the safe side.

  4. Candice and Crystal Says:

    Hey Dawn and Katy,

    I know that you have been talking to our parents. I am sorry to hear about all of this. I just wanted to let you know that you are in our thoughts and prayers. God is in full control of your life and he will supply all of your needs. Having your gall bladder removed might solve all your problems. Just keep relying on him.

    We love you.

Wednesday 7AM February 28, 2007

Katy has been through every test that RMH had to offer her throughout the night. True to form the tests results appear “Normal” and therefore we were sent home this morning with the recommendation that Katy go back to using her pain patches! Needless to say, our trip home was silent. There is nothing left but groaning in our spirits. Katy has gone to her room and I pray is being consoled by the Lord Himself. I’m planning on calling her doctor again today to discuss other drug options. I will add that one of the CAT scans suggested there was a “thickening” of the wall of the gall bladder and a further gall bladder function study was recommended.

Katy was able to sleep between tests, but I have not slept since yesterday so I will quickly get some rest now in order to better comprehend the phone conversation I’ll have later with the doctor. We are all eagerly awaiting better days for Katy. Thank you for praying.

Comments:
  1. Jennifer S. :-) Says:

    Katy,
    I can’t believe they sent you home! It seems like there is more that they could do. I hope and pray that the Lord will grant you relief from your pain and sweet sleep. Keep your chin up–I know that it’s hard now and it’s hard to hear that you’re in pain, but I know the Lord has His reasons and He is faithful.
    With love and prayers,
    Jen :-)

  2. Sandy Says:

    What a frustrating time. I pray for peace that passes understanding for you all today and for some insight for the doctors.

  3. Karen Tillman Says:

    Dear Dawn,

    I know your family must be completely drained right now, so please continue to rely on God and he will see you through. As for gallbladder issues……if memory serves me right….those of us with a crohn’s condition can be more susceptible to gallstones. I will also tell you , the pain from them can be excruciating. Not from personal experience, but from watching my husband just double over in pain for hours. We would give him some pain killers, and let him sleep it off until my GI doc was able to see him. At which time she recommended that it be taken out. He would have infrequuent attacks, but she didn’t want him to get into an emergency situations. So, with that being said, my hope is that this could be a big part of Katy’s problem, as it can be easily remedied even with HPS. As always, my prayer will be that you can get some rest, that God will brighten Katy’s spirits, and that God will give the docs the guidance and answers they need to figure all this out.
    God Bless and Care for you all,
    Love
    Karen Tillman

  4. Sara Says:

    All I can do is shake my head and sigh! I can’t believe they sent you home either.My prayer for you today is that the Almighty God of all creation bring His powerful healing to this humanly impossible situation.
    “When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways…. God will do the absolutely impossible.” Oswald Chambers, My Utmost For His Highest
    We will continue to pray for this supernatural healing!
    love,
    Sara P

Tuesday, February 27, 2007

Tuesday Night, Feb 27, 2007

Katy is being admitted to Roanoke Memorial Hospital as of 8pm tonight. There are signs that there are significant problems with her gallbladder, but they’re not sure what’s going on until they get bloodwork back. They may remove her gallbladder tomorrow if the bloodwork shows severe problems. The UVA doctors strongly recommended that she be admitted tonight rather than waiting for an appointment because the pain drugs are not covering the pain.

Please pray for Katy to have endurance for the pain throughout the night. Thanks!

Colin

Comments:
  1. Trisha Ferris Says:

    So sad to read that you’re in the hospital since it’s not your favorite place. I’m praying for speed: a speedy diagnosis, a speedy recovery, & speed on the part of nurses & others who respond to your requests. Let me know if you want me to hang out with you.
    Trisha

  2. Aleah Yunger Says:

    Ah, my sweet Katy! Prayers to you, dearest. I am sending a fun surprise your way, so hopefully you will get that soon & be able to enjoy it :) I think of you often and am so sorry to hear you are back in the hospital. I will be lifting you up before the Father tonight! Love always, Aleah

  3. Karen Tillman Says:

    Dear Colin,

    Thanks for the update. I just emailed Dawn before I checked your site, b/c she liked our videos. Please know my thoughts and prayers are always with your family.
    Love
    Karen Tillman

Monday, February 26, 2007

Monday Night February 26, 2007

Pain level 10

Acid reflux: minimal

Calorie Intake : 1200

Fentanyl 12.5mcg, Prednisone 40mg, Nexium 40mg, Dilaudid

The pain in Katy’s bones and gall bladder is at very high levels. She is doing very poorly tonight. She has gotten very little sleep for two nights now, and is worn out. Her doctor has ordered tests to check her gall bladder, and is also talking to us about finally trying a more aggressive treatment for the GI problems she is having. But the gall bladder issue needs to be resolved before medicines are changed. Pray that the tests will reveal what is going on, and if Katy needs surgery, we will find the best physician to do it right here in Roanoke. God bless you all for helping us pray. Katy sends her love to all, she has not been able to sit at the computer to write very much. We are watching mysteries and good old movies during the day. It helps.

Comments:
  1. Beth Sprankle Says:

    We are sad to know things are so hard right now. We are praying, and we send our love. Our amazing Jesus is right there with you, loving you soooooo much….

  2. Jennifer Blugerman Says:

    Katy, Paul, and Dawn,
    I am so sorry that the pain has gotten so terrible! We are all praying for you. I know that you are all exhaused and I don’t know why God is allowing this to continue, but I pray that He will be gracious and allow us to see Himself be glorified through it on this side of Heaven. You are teaching me (and many, many others) about what real perseverance looks like. If Satan is trying to get you to curse God, he’s got a real fight on his hands! I don’t think he ever imagined such incredible strength of faith in such a small frame! Good things truly do come in small packages! ;-) To God be the glory! May you fight on with the banner of Joy in your Salvation proudly before you!

    -Jennifer

  3. Sandy Says:

    Prayers continue from here. Hang in there, my friend!

  4. Lillian Oliveira Says:

    Oh, Katy dear, indeed I am so sorry to see your pain level at 10! and needing Dilaudid. May our God of mercy soon find that “he can bear your misery no longer”…as we read today in the book of Judges…and bring speedy relief. Its hard for any of us to see purpose in our suffering, though we know there is; I often wonder how God can bear the suffering of innocent children who cannot understand any purpose in their pain; perhaps it is best expressed in what Jesus said “If anyone causes any of these little ones to stumble, it were better for him that a mill-stone had been hung around his neck and that he be thrown into the depth of the sea.” We know that human suffering all goes back to Satan’s victory over the first couple, but we also know that the Victory that Jesus bought is overwhelmingly greater - “and when you have been tried, you will come forth as pure gold.” God never wastes affliction! He will use your suffering for holy purposes, we know. May He soon grant you a way of escape, and His gracious presence and power to endure at this time of pain.

    With loving prayers, Aunt Lil

Saturday, February 24, 2007

Cooties

I was thinking about my third grade gym teacher the other day. I haven’t thought about him for years. His name was Mr. Fleck. Back in the mid sixties we had gym class with the boys and girls together. We learned the basics of basketball and softball, ran relay races, and even learned square dancing. I had been on physical activity restriction from my doctor because of taking cortisone. My bones had to be protected from breakage so I spent most of my time sitting on the stage in the gym watching while the boys and girls romped and played. But one day Mr. Fleck turned to me and asked me if I thought I could square dance with the other kids. Thinking back on it, I must have been tapping my toes and giving him some reason to believe I wanted to be dancing rather than watching from the sidelines. I was thrilled to take my place on the gym floor with the other kids.

I proudly joined one of the four dance circles and listened to the instructions carefully. I was so excited to be joining in that I’m sure I must have been grinning from ear to ear. The class learned the steps and how to reach for the hand of our partner as we made our way around the circle. Something went wrong when I reached for the hands of the boys. They refused to take my hand and whispered “cootie” as I passed each one. I suddenly felt so out of place. It was as though by being on the sidelines so long I had gotten moldy and no one wanted to “catch” what I had. After a few minutes the music came to a sudden stop. We all heard the whistle that Mr. Fleck used when he wanted our complete attention. There was complete silence. Suddenly I heard my name in that booming male voice and I wanted to sink into the gym floor. “Dawn, tell me why the boys are not taking your hand!” “I have cooties, Mr. Fleck,” I said with great embarrassment. He asked me to go to the office and wait for him there. I left the gym feeling chilly, like sitting in a wet bathing suit on a cold day. I don’t know what all he said to the class that day, but no boy or girl ever called me “cootie” again. I don’t recall ever hearing any more about the situation. I don’t even remember how I got back to class. But I did feel differently about Mr. Fleck. I wasn’t afraid of his whistle after that. I was blessed. I had a Mr. Fleck to come to my rescue. I know what it feels like to have someone stand up for me and plead my cause. I know what it is to believe for a little while that I was unworthy until someone stood up for me as though I really had value. I wonder how many children came to believe they had cooties but had no Mr. Fleck in their lives to tell them otherwise.

Yesterday, when I wrote about being in the presence of the Lord one day, I had a fleeting thought, “Am I worthy?” Then I remembered that there is One who will speak for me. There is One who has claimed me for His own and defends me. I have received the gift of salvation from Jesus, Who gave His life for me. He will speak on my behalf, unworthy as I am, and proclaim to His Father that I am His. I’ve been washed by the blood shed for me on Calvary, and in His presence I will not need to hang my head in shame. I don’t know whatever happened to Mr. Fleck. But I do know that Jesus is alive and active in this world, looking for others to defend, to embrace and welcome home. To be free of being called “cootie” was terrific. To be free from my sin and shame is the greatest gift I have ever been given. Thank You, Lord!

Comments:

  1. Jennifer S. :-) Says:

    Mrs. Campbell, I think that is one of the best pieces you’ve written yet. It was so encouraging to me. Thank you!!
    ~Jen :-)

  2. andrea russell Says:

    Dawn, that was a wonderful story! I was one of those Kids who didnt have a Mr. Fleck. When I was a pre-teen I had severe acne and ekzema and kids teased me to the max. Once they wrote outside my frontdoor with chalk ” here lives the girl who has streusels” at that time in my life I felt so ashamed and the world was crushing in for me. I wish I had known the Lord than, but I had only my parents. Well thats my story! Haha
    I am so glad Katy is doing so much better!
    Love Andrea

  3. Doris Harriff Says:

    Dawn, that really resonated with me! I was sort-of the outcast in our elementary school, and there was always some “reason” for nearly everyone to avoid me. The one time it was “lice” - nobody had heard the term cooties then. I knew it wasn’t true, but no teacher came to my rescue. There was one student, though, who refused to avoid me. He came and sat beside me on the ledge of one of the basement windows of the school (you can ask your father-in-law what that was like), and said, “I don’t think you have lice.”

  4. Heather Kirkwood Says:

    Hey Dawn,
    Just poking my head in to say hello. I could relate to the story as well. I was always picked on as a kid, and the worst part was most of the time the teachers were totally aware of it. I hope everything’s okay with you all. I’ve had a few folks asking about Katy the last few days. Everyone’s thinking of you all.

  5. Jennifer B. Says:

    Dawn,
    Your post brought tears to my eyes. I was tortured (”picked on” is too tame a word for it) all through elementary, Junior, and most of High School. The popular girls and boys found me an easy target. In elementary school, I wall taller and thinner than just about everyone. And because I was tender hearted, I didn’t fight back. So the abuse continued year after year. My gym teacher was no Mr. Fleck. She turned a blind eye to my suffering and that of others. She even enabled it, by picking popular kids as team captains who would then select teammates from the remaining students. I can still remember the flush feeling and dread as student after student was selected, and then there was just me and my best friend, Katrina! Every day it was the same. You never get used to living with the butterflies in your stomach. You never get used to the degrading name calling and mocking. I only had one teacher who came to my defense. Mr. Griffith, in 6th grade. A mean boy kicked me during recess for no reason. I told Mr. Griffith, and to my surprise he said, “Kick him back, you have my permission.” I was floored! “Really” I said? So, I walked over to this kid and, yes, I gave him a swift kick in the shin! When he came running up to Mr. Griffith, he got no sympathy, and a lecture in how to treat others! Mr. Griffith was my hero! Too bad I didn’t encounter others like him. My agony finally stopped my Junior year in high school. My best friend (the same one from elementary school) betrayed me and became one of my tourmentors. I can remember sitting at home in a fetal position, depressed, crying, and crying out to space. I had accepted Christ as a young teen, but He wasn’t real to me yet. But surely it was He that suddenly gave me the thought, “Jennifer, why are you allowing others to determine your worth, and your feelings? Why are you letting them control you?” That was my “Aha!” moment! I suddenly realized that I had a spine, and I simply wasn’t going to take it anymore! It changed everything! My senior year in High School was great, and I went on to enjoy college with a whole new attitude. I thank the Lord for snapping me out of my pity party, and for allowing me to use these bad experiences to His glory as I relate to others who may have low self worth because they allow others, not God, define them. Thank you for sharing, Sister!

    -Jennifer


Saturday February 24, 2007

Calorie intake: 1100

Reflux: minimal

Pain level: 2

Medication: Fentanyl 12.5 mcg, Steroid reduction today from 42.5mg to 40mg

Katy is doing well after a pretty hard crash from the last Fentanyl reduction. She is up on her feet today and even hosted a missions meeting here at the house tonight, all on her own. We are so amazed by her resilience.

Friday, February 23, 2007

I Know That My Redeemer Liveth

Ask any Christian tried by fire or one who was invited to step into the deep waters how they’ve gotten through it. The answer is surprisingly simple. We don’t pass through the fire and water on our own strength. We don’t have a secret exercise or vitamin to keep our strength up. Not even Jesus had a network of friends in the middle of a dark night willing to stay awake and pray with Him. So what do we have as Katy struggles through another night, with the winter wind howling outside? We feel the warmth of His living presence all around us. We know we are in His tender hands and our hearts are at peace. What I have learned is very simple. I know that my Redeemer liveth. And on that last day He shall stand upon the earth. And we will behold Him, fall to our knees and say, “Our Redeemer lives!” That “He lives” is the only explanation that a worrier and compulsive “fixer” like me could ever have made it through the fire thus far. When thou passest through the waters, I [will be] with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. Isaiah 43:2

Comments:
  1. Aleah Yunger Says:

    This is a Chesterton quote I’m sure you’re aware of, but I couldn’t help thinking of it as I read your entry…

    “There is nothing you can want, there is nothing you can ask for,
    there is nothing you can need in time or in eternity,
    there is nothing living, nothing dying,
    there is nothing in this world, nothing in the next world,
    there is nothing now, nothing at the resurrection-morning,
    nothing in heaven which is not contained in this text - ‘I will never
    leave thee, nor forsake thee.’”

    Glad to see you are still clinging to His promises and the hope of life eternal with our Father! Prayers for you always.

  2. Lillian Harriff Oliveira Says:

    Bravo, Dawn! Keep that faith brightly burning. It lights up and warms others in the storm!

    So very glad to see Katy’s caloric intake improving rapidly! Love you much. I’ve been very homesick for Florida today. Asking the Lord to help me honor Him by waiting patiently. After all, it’s only waiting. Its not suffering! I always pray for you all, in fact, just finished afternoon prayers about a half hour ago. Love much, Aunt Lil


Friday Morning February 23, 2007

Calorie intake: 1300

Reflux: minimal

Pain medication: Fentanyl Patch lowered again today from 25 mcg to 12.5 mcg

Katy decided not to wait to lower her pain medication. She is experiencing some hard withdrawal symptoms and I am awake with her using creative thinking skills to keep her mind busy. She has been determined to get off any medications that are not really helping, so she is sticking by her decision. She should feel a lot better by mid afternoon on Saturday.
Pain level: 3 The pain is located mainly in the area of the gall bladder again.

Comments:
  1. andrea Says:

    Hello Katy and Dawn,
    I dont know what to say but I feel so sorry about Katy feeling so miserable, and you getting probably not enough rest. I will pray for you as I always do, perhaps I have to pray a bit bolder.
    Love In Christ
    Andrea

  2. Karen Tillman Says:

    Dear Katy,

    Just wanted you to know that I am thinking of you during this time, and pray that the withdrawal becomes more tolerable.

    Love and Prayers
    Karen Tillman

Wednesday, February 21, 2007

Wednesday February 21, 2007

Calorie Intake: 1200

Reflux: Minimal

Pain level: 2

The withdrawal shaking has stopped. Katy will maintain at 25mcg through next week. She has complained throughout the day of pain in the upper right side.

Other medications unchanged.

Monday, February 19, 2007

Real Life

Overcoming the physical challenges of HPS has tested Katy and me. One day things seem to be getting better and then for no particular reason all her symptoms flare up and for several days Katy is in bed. We have adjusted fairly well by being flexible and letting go of our expectations. We are both organizers. We both keep a calendar. We both like planning the events in our lives. However, since last July we have been unable to plan, organize, or count on anything. I find myself not committing to events until the very day they happen, never knowing how things may be with Katy.

A positive outcome of this unpredictable syndrome is the way we have taken the attitude that we are going to enjoy life no matter what. Katy is going through another set of withdrawal symptoms today but we decided to look forward to it. We are feeling celebratory because after this “step down” she will be half-way through the process. Last week when we were in the library I said, “Katy, next week when you are going through withdrawals, let’s plan another mystery marathon.” We checked out some mysteries and came home happy to know the next few days could even be fun! We enjoyed today and kept busy, then settled down to watch our mysteries this evening. We even watched a home buying show and picked the house we wanted and talked about how we would decorate it. The home was in Florida, so we dreamed about that, too.

I don’t want to look back on these days with regret. I want to know we did all we could to make the most of the time. I don’t want to think years from now that we “could have, should have, might have…” Katy and I are dreaming big dreams these days. We believe God is going to give us the opportunity to make some of those dreams a reality. Real life is not the daily coping skills we are learning. Real life is the dreams we are dreaming, knowing it is by faith that dreams become a reality.

Comments:

  1. Karen Tillman Says:

    I couldn’t have said that any better myself!!! I know that you are inspiring people with your attitudes as we speak, and you are welcome to share this with Katy as well. May God give you and Katy a goodnight’s rest.
    Love Always
    Karen Tillman

  2. Katy Says:

    Mom, I have such a blast dreaming with you! One blessing of having a mother with such a vivid and clear imagination is that our dreams feel more real than fantasy. However, I do look forward to the time when our dreams will turn into reality…especially those dreams involving trips.

  3. Lillian Harriff Oliveira Says:

    Hey, Dawn, I LOVE THAT IDEA OF A HOME IN FLORIDA! I recommend ST. PETERSBURG! We can be neighbors!!! Waiting for the blessed moving of the Lord in this “dream to be”. Much Love, Aunt Lil


February 19, 2007

Calorie Intake 1000

Reflux: minimal

Pain level 2

Katy ate more than usual at each meal and didn’t have a problem with reflux during the meal. This is a great improvement over last week.

Medication change: Step down on Fentanyl from 37.5 mcg to 25 mcg. All other medications remain the same.

Saturday, February 17, 2007

Men and Women

I went to a baby shower brunch this morning. Knowing I was having a “girlie” day, I put on a skirt and went with matching hose and shoes. I dotted on a little fragrance and was happy to have pulled myself together for a delightful day. The brunch was lovely. We were served platters full of fresh fruit, vegetables, and delicious little sandwiches. Coffee was served in a china cup, and several friends wore festive sweaters to the baby shower. We were celebrating a new little life, a little girl due to be born in late March. As the mother-to-be unwrapped the darling pink outfits, we were in fits. Meanwhile back home, Paul pulled on his “shop clothes” - the ones that have a faint odor of solvent and hydraulic oil no matter how many times they’ve been washed. We crossed paths as I was on my way from the baby shower to an afternoon tea party. He had on his ball cap and looked very happy as he headed out to work in his shop.

When Katy and I arrived at the home of our friends for the tea party, the table was set with beautiful china and lavish Valentine decorations. The aroma of chocolate and fresh sliced fruit greeted us when we walked in. Even the apple slices had a little heart shape cut into the center of them. Katy and I love that kind of detail. The hostess wore lace and the other girls had come wearing their pretty sweaters and skirts. Katy has pictures of this tea party on her “Musings” site tonight. Our friend even wore a white lace apron, proving that today was definitely not just an ordinary day for us girls. Meanwhile, the father and brother of our hostess were dressed in their “outdoor” gear. They had on their caps and thermal shirts, because they were headed out to do some shooting in the woods. When the ladies arrived for the tea party they were out of there pretty quick. They looked very happy when they returned smelling of the great outdoors and a little gun powder.

The women had a great day. Our day was everything feminine and prissy. The men had a great day. It was everything gritty and manly. At the end of the day, Paul and I are getting into our comfy lounge wear, brewing some tea, and will soon settle down on the couch together to watch a movie. We will both prop our feet up on the coffee table and think, “Wow, today was a great day.” And neither one of us would have wanted to experience the other’s day. We were perfectly satisfied being male and female. “And the Lord God caused a deep sleep to fall upon Adam, and he slept; and the Lord took one of his ribs, and closed up the flesh. And the rib which the Lord God had taken from man, made he a woman, and brought her to the man.” Genesis 2:21-22. And somehow with all the differences between us, the Lord makes it work, and declares it “good.”

Comments:

  1. Karen Tillman Says:

    Dawn, I was simply entranced as you made the comparisons of the day. I think the best part was settling down on the couch, and although the 2 of you were so different in the daylight hours. You were still able to come together as a couple and delight in each other’s presence. Isn’t it wonderful when God provides us with such a mate!! I am so glad that you guys had such an awesome time yesterday too.
    Love
    Karen Tillman

  2. Hollan Says:

    Hey Katy,I keep up with you through Elaine Newton,and she has not been feeling so good lately! I have been praying for you all! Katy you can call me at 977-2247 on my house phone if you would like to just girl talk sometime about things!

February 17, 2007

Calorie Intake: 900

Reflux: minimal

Pain level: 5

Energy level has picked up. Katy was able to visit with friends for the afternoon.

Medications: no change

Friday, February 16, 2007

Daily Joy

When Paul prays for me in the morning he usually asks the Lord to give me a joyful surprise; something to encourage me. This week the Lord has sure blessed me with encouragement. Seeing those horses running free in our field was great. Going out for a Valentine lunch in the middle of the day made me feel like a princess and today Katy and I went shopping just like we used to. She got up and said, “I feel good enough to get up, dress, and shop today!” My heart took one of those little leaps like a happy child does when they get excited. We went out to find a baby shower gift and I’m beginning to notice when we look at baby things, Katy finds something she just has to have for Annelise. It’s sweet to see her hold things up to check out the size and try to figure out if Annelise will be big enough by summer to fit into a particular little outfit. The shopping was fun. During the day I watched Katy eat with more enthusiasm, and she had less trouble afterwards. I pray this upward trend continues. Even when things are so hard to deal with, there is something that happens to give my spirit a real lift and I know that the Lord is honoring Paul’s request. I’m so thankful that Katy had a good day. If she is feeling well tomorrow she is looking forward to another afternoon outing that she will want to tell you about.

Our devotions this morning focused on learning to be content. The emphasis was on the word learning because as Spurgeon pointed out, is is something that has to be learned. We are not born to be content and pleased with our lives. How we learn to be content is up to the Teacher. He brings us through many dangers, toils, and snares, but His grace is leading us to a place of contentment and His grace will lead us home.

Comments:
  1. Kristin Dunker Says:

    Hi Dawn!
    I loved reading your last post, “The Next Day”. What a delight! I can absolutely relate. :-) I get so discouraged hearing everyone say, “Well, 25 years and 3 kids later, we just aren’t romantic anymore”. How sad! How much they miss! My mission in marriage is to prove to people that it is possible to keep the sweet romance alive…that it’s a gift that I believe God wants to give us, and how wonderful to hear there are other souls out there still enjoying the bliss! Thank you for encouraging my heart, and for spreading the message. Who knows, maybe you inspired some to desire the winds of change in their marriage? With love,
    ~Kristin

  2. Martha Harrison Says:

    Being an “Incurable Romantic” is a good thing! This is a chronic condition that I have enjoyed living with for almost 56 years. I understand there is no cure, nor am I looking for one. Valentine’s Day has always been one of my favorite days because I love surprising Howard and look forward to his surprise for me. Just exchanging cards expressing our love for one another means alot to me. This year Howard gave me a box of delicious Whitman’s chocolates which we both enjoyed! I’m glad you could slip away for lunch with Paul. Those special “dates” mean everything! Keep them up!!
    Blessings, Martha


February 16, 2007

Calorie Intake: 1000

Reflux: Minimal

Pain level: 3

Energy level picked up today. First day out of bed since Monday. Withdrawal symptoms minimal.

Medications:

Prednisone 42.5mg, Fentanyl 37.5mcg, Nexium 40 mg, Elavil

Thursday, February 15, 2007

The Next Day

I loved my Valentine lunch. Paul and I ordered a pot of tea to finish off our meal. A pot of tea goes nicely with a relaxing conversation too. The problem I have after a day like yesterday is that I want to do it again. Even while we were eating I thought, “This is a great date. I’m sure my need for relationship is satisfied and I’ll be good for another two weeks.” It was all I had hoped for. I was refreshed.

The problem started early this morning when Paul kissed me goodbye to head out the door for work. I wanted to fling myself in front of the door and say, “You can’t leave!” I almost did. All those feelings of being satisfied with yesterday’s date were gone. Halfway through the morning I had already called the office once and sent him an email thanking him for the Valentine lunch. Some may call me emotionally challenged or co-dependent, but I think it’s nice to feel this way after thirty-three years.

I know not everyone reading this post had a Valentine’s Day celebration, and my son Paul Burton has coined it, “Singles Awareness Day.” But isn’t it good to know that there are still people in this world who have been married a long time and think marriage is fun?

Comments:

  1. Andrea R Says:

    Hi,
    well first of all THANK YOU for coming over to my Blog. And especially for the comforting words. I responded to your comment on my site :)
    Anyways, I dont know if anyone knows it from Church and I dont care, I am an open book. I came to the States in 1992 and got married that same year to my husband, but we didnt make it. We separated in 1999 and I moved to VA. In I believe 2001 we got divorced, after we havent seen each other for 5 years ( We talked every blue moon on the phone, like once a year or less), we met up Thanksgiving 2004 I believe. We got remarried on July 13th, 2006. I love him very much and now I believe he does love me too! Our Valentinesday was very quiet, and we enjoyed been just at home watching TV, since he usually works nights and it was his night off. So all in all I had a good Valentines, but I have to say we are not into special things like cards and flowers and stuff. We can do that any day…lol
    Anyways there you got a little more about me!
    Love you very much
    Andrea

  2. Adam Thompson Says:

    I just noticed that the abbreviation for Singles Awareness Day is SAD…hmmmm. :-D

    But yes, it is quite cool that there are people who have been married a long time and are still having fun at it. :-) That’s the way it should be, IMHO.

Medical Post

After this post, when you view this part of the the blog it will be more for medical information than inspiration. We decided to break down this blog into three sections. The Medical Update will be just that. Dawn’s Musings gives me the freedom to write about things other than Katy’s health. Katy’s Musings gives Katy a chance to let you know what has been on her heart. It will always be a worthwhile read. Her heart is always filled with little treasures. That is one of the reasons Katy and I don’t mind being awake in the middle of the night. We always enjoy our late night chats.

Katy has had the withdrawal symptoms of Fentanyl. Her dosage was lowered by 12.5 mcg on Tuesday, but the hardest day was today. She is sitting beside me now writing to friends and that is the best indication that she is making progress and concentrating again. Paul and I think she should not go through another step down until next week and give her body a rest. At first she wanted to do it right away, but now sees the wisdom of waiting a few days before lowering the dose another 12.5 mcg.

The NIH protocol is on our minds several times a day. We pray for the people responsible for the protocol, and their ability to get the necessary paperwork done. Everyone keeps coaching Katy to just hang on because better days are coming. She says, “Hasten the day!”

Comments:
  1. Jennifer S. :-) Says:

    Withdrawal symptoms are not fun–I’ve been there and done that with an antidepressant. Just hang in there–I promise it gets better!!
    Love and prayers,
    Jen :-)

Wednesday, February 14, 2007

The Escape

This morning after Paul left for work I crawled in bed with Katy. We were sound asleep when suddenly our dog Ellie started barking on high alert. I sprang out of bed in time to see three beautiful horses turning into the driveway, galloping full speed toward the field next to our grape arbor. I recognized them right away because I had ridden one of them last spring. I watched while they became interested in the lawn. I called our neighbor, Donna, to tell her the horses were visiting our house and grazing contentedly. Because she had been running around their property looking for the horses, she was out of breath when she answered the phone.

Donna gasped that she would be right over to collect the horses. I looked out the side window to observe how peaceful and serene the horses appeared, unaffected by any thought or care. They had no schedule to keep. They had found a sweet patch of greens in our volleyball court. They were settled in and happy. In ten minutes, Donna and her daughter Maylin could be seen making their way through the field with a bucket of treats and ropes in their hands. I observed from the window that one horse was interested in the treats. While she had the horse’s attention, Maylin slipped the rope effortlessly over the horse’s head. With Maylin and Donna leading one of the horses, the other two pranced and ran through the field following their “partner” home to their own pasture.

I want to be like the horses today. I want to make a run for it. I want to prance through the field and find a wonderful adventure with no care about my schedule or responsibility. That’s just what I am going to do. It is Valentine’s Day. Paul invited me out for lunch and then we are going to have a look around one of my favorite antique stores. After a few hours my heart will lead me back home, to my own pasture where everything familiar will somehow seem new and refreshing, and I will have known the the joy of “escaping” just for a little while.

As the Lord observed the horses running free this morning, (we know He did because His word says even a sparrow does not fall to the earth without His notice), I think He was delighted with the little outing the horses took today. I know He’ll be delighted with my “escape” because Paul and I want to celebrate the love He gave us. “Thou openest thine hand, and satisfiest the desire of every living thing.” Psalm 145:16. Happy Valentine’s Day.

Comments:
  1. Doris Harriff Says:

    Did you have a nice escape, Dawn? And now happy to be back in your cozy home!

  2. Trisha Ferris Says:

    Dawn,
    What a romantic you are! I love the horse story & the idea that the Lord took delight in their escape, something I never would have thought of on my own. Just another evidence that you were meant to write. Keep it up, sister.
    Trisha

  3. Martha Harrison Says:

    Dawn, I love this story about the horses! You are the best! Who else could write an interesting account like that about 4 horses belonging to a neighbor running loose?
    Not only write a story, but you so beautifully bring a spiritual lesson out of it!! I am blessed every time I read your entries. Yes, I loved seeing you and Katy at the store! God is so good to give us abundantly more than we could ever ask or think!!
    Love and prayers, Martha

Hope on the Horizon

We have just heard that there is something quite amazing happening with treatments for HPS. The timing of this is no coincidence in our view. The following information has been copied from Heather Kirkwood’s website. She attended the HPS conference in New York and wrote about it to inform others. Heather has been a good sounding board for me as we have experienced so many disappointments with doctors lately. There is a sentence in the paragraph below in which Dr. Yao acknowledges that the GI problems of HPS are not effectively addressed at this point. We have certainly witnessed that. Katy’s doctor told her just two days ago that since all her tests are coming back normal there is nothing more they are willing to try. That news was not what Katy expected. She went to bed last night feeling weary by the thought of having to go on living with the misery she now is enduring. We wondered if all these prayers for Katy, and prayer for wisdom for the doctors, is something God will use to help not only Katy but thousands of others suffering in much the same way Katy has. Our hope is that Katy will qualify for this protocol and help the scientists and doctors at NIH better understand the physical differences in those with HPS.

A new G.I. Treatment Protocol for Hermansky-Pudlak Syndrome was announced by the National Institutes of Health. It was announced in New York at the family conference last weekend. They’ll be launching a treatment protocol for the GI problems associated with HPS “sometime this spring.”

Heather writes:
“The final paperwork isn’t yet complete, so please keep in mind that last-minute changes can still be in the works that I don’t know about. All I’m reporting here is what was announced at the conference.

Dr. Yao, a fellow working under Dr. Mannon, will be running the day-to-day operations of this protocol and thus presented it to the HPS patient community. Dr. Yao is a new doctor to HPS, but he’s been “assigned? to us by Dr. Mannon. Our mission now – wow Yao in hopes that he takes on HPS as his personal cause! Grin! Since the protocol paperwork isn’t yet complete, however, there is not yet a patient services person for interested families to contact. Don’t worry! The minute there is I assure you I’ll be posting it!

So, the crux of the protocol.

Essentially, Dr. Yao said that medicine has an incredibly poor understanding of the GI issues associated with HPS. In some ways they resemble ulcerative colitis and in other ways Crohn’s disease. Two years ago a “suspect cytokine? was identified that might be part of the problem, but in subsequent studies it wasn’t found to be as prevalent as first thought.

The problem is getting research for an ultra rare disorder isn’t easy. NIH chose to focus on the lung problems of HPS first because although treatments for the GI issues for some patients are less than ideal, most eventually do respond to some therapy and can go weeks, months or years with little if any problem. The pulmonary fibrosis of HPS, however, is 100 percent fatal and there was no treatment option available.

While this tactic is understandable, for those really suffering from the GI issues it still falls woefully short of what is needed. And, NIH agrees.

One of the challenges to understanding the GI issues associated with HPS, however, is that NIH never sees really, really sick GI patients. As there’s been no treatment protocol, they weren’t prepared to take on patients in the midst of a crisis.

The result, however, has been that patients with HPS and GI problems get treated at home, each in their own city, and each with their own doctor. The result is a pile of case studies and isolated incidence reports. It’s hardly a comprehensive way to study a disease or a systematic way to determine which treatment options are likely to get the best results.

So, my impression of what this new GI protocol intends to do is to gain a better understanding of the biochemical processes involved by seeing more patients and not necessarily only when they’re well.

The doctors are looking for patients over 18 years of age (although minors may be considered on a case by case basis) who have a confirmed HPS diagnosis, history of GI problems, documented inflammation in the GI system and preferably those that are only somewhat controlled by their current treatment. Dr. Yao did stress that patients shouldn’t be too quick to think that they might not meet the entrance requirements. He asked that if we have GI problems, to go ahead and get in touch when the protocol opens and let them look at our cases to decide if we’re a good fit.

Patients who look like they’re good candidates will be asked to come to NIH for a screening visit – probably involving several days in the hospital getting tests done. The team will do a comprehensive medical record study, carefully look at the patients’ medications, history of responses to the medications and look to see if there’s anything that they can do to optimize the treatment.

If the current medications the patient is receiving seem to be poorly controlling the GI issues, NIH will suggest other options. All treatment, including medications, will be free at the NIH. Patients will travel to NIH (at NIH’s expense) every few weeks to few months, depending on how responsive their GI issues are to treatment.

If a treatment doesn’t work, they’ll try the next most powerful one, up to and including Remicade and Humera. The protocol is a treatment protocol, but no placebo is involved since they’re studying which treatment options, already FDA approved, work best for patients with HPS. However, Dr. Yao did say that if even Remicade was unsuccessful for a patient, the team would then look at experimental drugs as options for that patient.

It’s a good start at doing more for HPS patients than performing colonoscopies and taking biopsies. It would be more comforting to think that the scientists had uncovered some brilliant possible cure they wanted to try out – but, on the other hand, this is a first step. They’ve got theories but they need more data.

The folks at NIH have a better understanding of HPS than anywhere else, even if they don’t have all the GI answers. I’m hoping that if we as patients can cooperate with their research, we can quickly give them what they need to determine the next step.

The other reason I’m thrilled about this protocol is that it removes the whole issue of cost from the picture. There are so many HPS patients with either no insurance, or not-so-great insurance that seem to be getting less than optimal treatments for economic and not medical reasons. That impacts our understanding of what really works best. Since NIH seems to be willing to provide any treatment needed, even Remicade at $10,000 a dose, we really will get a better picture of what works best – and offer many HPS patients a chance at better treatments they won’t have access to at home.” -Heather Kirkwood

Dr. Yao

Dr. Yao from the National Institutes of Health.
He will be running the GI protocol for Hermansky-Pudlak Syndrome.

Comments:
  1. Trisha Ferris Says:

    Your post expresses both profound disappointment & reason for profound hope. I will be praying that Katy can get in on this study, and that she has the strength to hang in in the meantime. The Lord is going to use Katy’s illness to bless manuy people in the future just as He has already.
    Trisha

  2. Anne Poler Says:

    I find it a very positive development that the NIH will be specifically looking at the GI issues of HPS. I’ll also be praying that Katy will be admitted to the study, that more answers will be found, and that she can find some relief.

    Also, loved the picture of Paul Burton in the green gloves. Very photogenic!!!

  3. Linda Says:

    Dear Katy,

    What a blessing it has been to see God’s love poured out on you & your family in these recent difficult months. So many of us have gotten to know the Lord more intimately by seeing His love demonstrated in your lives & in the lives of those who have ministered to you. As so much focus is put on love today, we know that the ultimate love was in God’s giving of His Son for our eternal benefit. Thank you for being such faithful servants in such trying times.

    Katy, you are truly a sweetheart through & through. I hope you feel the love of the many, many friends & family that you have & more than that the love of the Lord because He has shown us what real love is like….and His love never changes!

    Bless you this day, dear Katy!

    Love to you & yours.

  4. Sandy Says:

    When I saw this news on Heather’s blog, I was so excited about the possibilities for Katy! I am glad they will be willing to see patients who are actively sick with the GI issues. Wonderful news!

  5. Carson Kistner Says:

    I have just returned from the annual widow’s luncheon we have at church each Valentine’s Day. Etholene Wills asked specifically about you today, Katy. When I gave her a little summary and told her you were frustrated over the numerous set-backs, knowing that the Lord still had work for you to do, this wise senior saint replied, “Oh, but don’t you know that He is using her right where she is.”

    Of course, we know that and your friends remind you frequently of that truth, though I think we do not see a fraction of what is really going on from God’s point of view.

    May His grace and mercy sustain you this day, dear little sister.

    Love,
    Carson

  6. Karen Tillman Says:

    Dawn,

    I truly hope that Katy will get into the protocol. I know that it is a much needed issue of all of us that have colitis and HPS that needs to be addressed. My prayer is that it will help Katy’s quality of life as well as the life of others to be greatly improved, and I also pray that all i are dotted and t’s are crossed very soon!!! Take care and know that you are loved.
    Karen Tillman

Monday, February 12, 2007

What is there to say?

I ran into a friend yesterday who just sort of grabbed me, hugged me, and said, “I would leave you a message on the blog because I read it everyday but I just don’t know what to say anymore.” I’ve heard that lately a couple of times. I want to say thank you for reading the blog. Thank you for praying. Thank you for not letting doubt or despair over Katy’s suffering keep you from believing that one day, we may all see the hand of God in such a mighty way that we will all drop to our knees together in awe, and have nothing to say because He has stunned us with His might. “Behold, I am the Lord, the God of all flesh. Is anything too difficult for me?” Jeremiah 32:27

Comments:
  1. Jennifer S. :-) Says:

    Katy,
    Sometimes I run out of things to say too, but I usually try to come up with something. :-)
    I hope your day today was better and the talk with the specialists went well. Thanks for keeping us updated!!
    With love and prayers,
    Jen :-)

  2. Heather Kirkwood Says:

    Katy,
    Looking forward to learning what the docs. had to say. I just posted about the new GI protocol on my blog, and a picture of the doctor you’d be seeing. We REALLY missed you at conference. BTW - are the musings things at the top supposed to be linked? If so, they aren’t working for me. Just FYI. It was neat to get to talk to you on the phone, even if only briefly!

  3. Sandy Says:

    It is hard for people to know what to say in situations of chronic illness, especially if they haven’t dealt with this kind of thing before. I’m very glad your friend told you she didn’t know what to say rather than just not saying anything at all.

    I hope today is a day of hope and rest at your home. God’s peace to you all.

  4. Jess Lankford Says:

    Hey guys!
    I’m eager for the day we will all be amazed! I think about this blog and how God has used it to reach people that would have never heard about Katy - so that they can pray for her and learn from her and your entire family! On Earth we will never know all the people who have been touched - but when we get to Heaven - what a fun reunion it will be! One time - someone posted that it would be fun to have a sleepover with all the people who stayed with Katy in the hospital…and I remember thinking - that’s a party that I wouldn’t want to miss…But I propose that when we get to Heaven - we have a reunion for all the souls who have been encouraged, strenghtened, supported, and saved through Katy’s ministry! What a fun day - sitting with Jesus, learning from Him and hearing about all the details He was working out behind the scenes; all the ‘chance’ meetings with friends, all the devinely appointed doctors, all the friends who never got a chance to meet except through the use of a website…It will be amazing!

    We hope you have a restful day! We love ya’ll!
    Jess

  5. Jennifer Blugerman Says:

    Hi, Katy! I hope you’re having a good day! I was reading the entry for yesterday and began to laugh about the changes our children go through. I have enjoyed Emma and Matt’s childhood so much. I hate the thought of it ending, but look forward to the exciting new discoveries as they get older. I love the concrete thinking stage that Matt is currently in as a five year old. The other day, we were playing “20 Questions.” The answer was Hawaii, so I was giving Emma and Matt clues to help them guess the answer. My first clue was, “I am the southern most state in the United States.” Matt quickly raised his hand, and said, “I know, I know…..New Jersey!” Laughing, I told him, no, that was not correct. I then read the second clue, “People here hula without hoops.” Again Matt jumped up and proclaimed, “Basketball?” “No, Matthew” I said “we’re talking about a state!” “But you said ‘hoops’,” he said defiantly. “Matthew, this is an island,” I said. “Oh!” he said. “The Beach?” I groaned, and finally Emma came to my rescue and said, “I know! It’s Hawaii!” Thank you, Emma! Needless to say, I’ve been spending a lot more time on geography since this!!! ;-)

    Blessings to you,
    -Jennifer

Sunday, February 11, 2007

Children Are A Heritage From The Lord

Children are a heritage from the Lord

When they are little and consume your days and nights, children are a real challenge. I remember thinking when the boys were little and both had the stomach flu at the same time that parenting is not a job for the faint-hearted. We see them through teething, illnesses, tantrums, and heartbreaks. Then suddenly one day, we’re having a conversation with them and we realize that we are talking to our friend. They exchange ideas with you and you think, “wow, their struggle for independence has given way to creative thinking and reasoning skills!” Dinnertime tradition moves from cutting up their food in tiny pieces to learning table manners then enjoying dinners with them by candlelight. The scriptures say this is the Lord’s gift.

I was feeling all sentimental today about that when Paul Burton came home from church and wanted to help us get ready for our Small Group meeting here tonight. He was in his dress shirt and slacks but that didn’t hinder him from donning bright green rubber gloves and cleaning the commodes. I thought the color combination was striking! So there I was in the kitchen making potato soup talking to Paul Burton who was just around the corner diligently cleaning the bathroom. I was chatting away about the potato soup recipe thinking, “He’s smart, handsome, cleans toilets, and listens to me chatter non-stop. I think I have raised the perfect man!” I looked around the corner of the kitchen to find out why he wasn’t responding to me and found out he had his headphones on listening to music and wasn’t hearing a word I said. So, maybe he isn’t perfect, but it is so much fun to have children who become our friends and share life’s ups and downs with us. We realize that somewhere along the way we become a team, helping each other, encouraging each other, and all the while, keeping the advancement of the Gospel message the goal of our lives.

As we look forward to our Small Group coming over tonight, we are thankful that Katy is out of bed and will be joining us for our lesson and prayer time. My mother-in-law gave me a refrigerator magnet that states, “There is no greater joy than knowing my children walk with the Lord.” I have found that to be true. And when they walk with Him they become like Him, serving, loving, and giving of themselves, for the sake of the Gospel. If you are in the middle of those diaper years, keep giving, keep loving, keep praying, and it will all come back to you one day. “For whatsoever a man soweth that shall he also reap” (Galatians 6:7). If you have done all that and your children are not walking with Him, remember with thanksgiving in your heart that the end of the story has not been told.

PB cleaning 003.jpg

Comments:
  1. Andrea R Says:

    Hello Dawn,
    what an encouragement you are to all of us. I do not know where you get it from (looking above), but you encourage me everyday I read this Blog.

    “If you have done all that and your children are not walking with Him, remember with thanksgiving in your heart that the end of the story has not been told”.
    And yes thinking of my son right now, you are absolutly right, it isnt over yet. My Prayer is that one day he will come around and find our Lord and Savior.
    Anyways I hope Katy having a wonderful time tonight at small Group.
    Praying for you all
    Love Andrea

  2. Doris Harriff Says:

    I look at your family - and go back to your in-laws’ family, and see how their children and their families are all serving the Lord, and wish it were the same in my case. My daughter has become extremely wayward, and my son doesn’t believe in God because of the things they went through as children, at the hand of their own father. I did my best, but couldn’t overcome his behaviour. I hope that, even so, the Lord will override all the evil that has been done, and that they will return to the things I tried to teach them as children. Even so, I can rejoice with you that your children are walking with the Lord.
    Aunt Doris

  3. Trisha Ferris Says:

    A man never looks handsomer than when he’s cleaning toilets in his dress shirt. Bravo, Paul Burton!

  4. Jennifer S. :-) Says:

    Wow, that story made me laugh. Paul is such a great guy, despite his headphones!! :-D
    Katy, I’m glad to hear that you’re up and about. That’s wonderful!! I hope that your talk with the doctors goes well tomorrow.
    With love and prayers,
    Jen :-)

  5. Jess Lee Says:

    Hey Katy,

    Just wanted to say that we missed you this weekend at the HPS conference. I was really hoping to get to meet you, but I know you weren’t feeling well and it was best that you stayed home and recovered.
    Know that Candice and Crystal performed amazingly (as to be expected :) , and you were in our hearts throughout the entire weekend.
    Hope you get back to feeling better soon.

    God Bless,
    JESS

  6. Jess Lankford Says:

    Dawn -
    Thank you for the encouragement! These days of wiping noses, cutting food and changing diapers can be so long and it seems like there is no end in sight! Thank you for the glimpse into the future! :)

    Praying for you at the dr. today!

    Love you all!
    Jes

  7. Karen Tillman Says:

    A man poised at the toilet, and cleaning it. That my dear is true love of a son!!! We missed you guys at conference, and I will tell you. It truly warmed all our hearts to be able to talk to Katy on speaker phone. I am still longing for the day that we can meet in person.

    Take care
    Karen Tillman

Children Are A Heritage From The Lord

Children are a heritage from the Lord

When they are little and consume your days and nights, children are a real challenge. I remember thinking when the boys were little and both had the stomach flu at the same time that parenting is not a job for the faint-hearted. We see them through teething, illnesses, tantrums, and heartbreaks. Then suddenly one day, we’re having a conversation with them and we realize that we are talking to our friend. They exchange ideas with you and you think, “wow, their struggle for independence has given way to creative thinking and reasoning skills!” Dinnertime tradition moves from cutting up their food in tiny pieces to learning table manners then enjoying dinners with them by candlelight. The scriptures say this is the Lord’s gift.

I was feeling all sentimental today about that when Paul Burton came home from church and wanted to help us get ready for our Small Group meeting here tonight. He was in his dress shirt and slacks but that didn’t hinder him from donning bright green rubber gloves and cleaning the commodes. I thought the color combination was striking! So there I was in the kitchen making potato soup talking to Paul Burton who was just around the corner diligently cleaning the bathroom. I was chatting away about the potato soup recipe thinking, “He’s smart, handsome, cleans toilets, and listens to me chatter non-stop. I think I have raised the perfect man!” I looked around the corner of the kitchen to find out why he wasn’t responding to me and found out he had his headphones on listening to music and wasn’t hearing a word I said. So, maybe he isn’t perfect, but it is so much fun to have children who become our friends and share life’s ups and downs with us. We realize that somewhere along the way we become a team, helping each other, encouraging each other, and all the while, keeping the advancement of the Gospel message the goal of our lives.

As we look forward to our Small Group coming over tonight, we are thankful that Katy is out of bed and will be joining us for our lesson and prayer time. My mother-in-law gave me a refrigerator magnet that states, “There is no greater joy than knowing my children walk with the Lord.” I have found that to be true. And when they walk with Him they become like Him, serving, loving, and giving of themselves, for the sake of the Gospel. If you are in the middle of those diaper years, keep giving, keep loving, keep praying, and it will all come back to you one day. “For whatsoever a man soweth that shall he also reap” (Galatians 6:7). If you have done all that and your children are not walking with Him, remember with thanksgiving in your heart that the end of the story has not been told.

PB cleaning 003.jpg

Comments:
  1. Andrea R Says:

    Hello Dawn,
    what an encouragement you are to all of us. I do not know where you get it from (looking above), but you encourage me everyday I read this Blog.

    “If you have done all that and your children are not walking with Him, remember with thanksgiving in your heart that the end of the story has not been told”.
    And yes thinking of my son right now, you are absolutly right, it isnt over yet. My Prayer is that one day he will come around and find our Lord and Savior.
    Anyways I hope Katy having a wonderful time tonight at small Group.
    Praying for you all
    Love Andrea

  2. Doris Harriff Says:

    I look at your family - and go back to your in-laws’ family, and see how their children and their families are all serving the Lord, and wish it were the same in my case. My daughter has become extremely wayward, and my son doesn’t believe in God because of the things they went through as children, at the hand of their own father. I did my best, but couldn’t overcome his behaviour. I hope that, even so, the Lord will override all the evil that has been done, and that they will return to the things I tried to teach them as children. Even so, I can rejoice with you that your children are walking with the Lord.
    Aunt Doris

  3. Trisha Ferris Says:

    A man never looks handsomer than when he’s cleaning toilets in his dress shirt. Bravo, Paul Burton!

  4. Jennifer S. :-) Says:

    Wow, that story made me laugh. Paul is such a great guy, despite his headphones!! :-D
    Katy, I’m glad to hear that you’re up and about. That’s wonderful!! I hope that your talk with the doctors goes well tomorrow.
    With love and prayers,
    Jen :-)

  5. Jess Lee Says:

    Hey Katy,

    Just wanted to say that we missed you this weekend at the HPS conference. I was really hoping to get to meet you, but I know you weren’t feeling well and it was best that you stayed home and recovered.
    Know that Candice and Crystal performed amazingly (as to be expected :) , and you were in our hearts throughout the entire weekend.
    Hope you get back to feeling better soon.

    God Bless,
    JESS

  6. Jess Lankford Says:

    Dawn -
    Thank you for the encouragement! These days of wiping noses, cutting food and changing diapers can be so long and it seems like there is no end in sight! Thank you for the glimpse into the future! :)

    Praying for you at the dr. today!

    Love you all!
    Jes

  7. Karen Tillman Says:

    A man poised at the toilet, and cleaning it. That my dear is true love of a son!!! We missed you guys at conference, and I will tell you. It truly warmed all our hearts to be able to talk to Katy on speaker phone. I am still longing for the day that we can meet in person.

    Take care
    Karen Tillman

Saturday, February 10, 2007

The Sweetness of Friendship

Today Katy stayed in bed most of the day, but at four o’clock I woke her up and convinced her to go to the grocery store with me. We drove out of the driveway and she said, “It does feel good to go out!” We walked into the grocery store and three of our friends were in the lobby. It was like a reunion. There were lots of squeals and giggles. We were so excited to see Linda, Martha, and Rhonda all standing right there. It was like a little victory party right there in the lobby. Martha has started a Bible study in her home and made sure to tell Katy that she is on their prayer list. Linda assured her of the prayers of other church friends as well. It was so sweet to see Katy beaming. It really lifted her spirits.

Tonight we had just finished watching a mystery movie when Katy’s phone rang. Her friends attending the HPS conference in New York gathered around a speaker phone to tell her they love her and miss her. The bright smile radiating from Katy’s face made me want to shout a huge “thank you” to all the friends God has brought into our lives to encourage us and cheer us on. It is humbling and heartwarming to be loved by friends and family when we need it most. God has surely given us a happy day, and the telephone call and the ordained meeting with friends will be right at the top of our thanksgiving prayer tonight. Thank you for praying for Katy today. She is ready and willing to try a new form of treatment. We are going to have a serious matter-of-fact talk with her doctor in Charlottesville on Monday.

Friday, February 09, 2007

Man Makes His Plans

“Man makes his plans but the Lord determines his steps.” Proverbs 16:9

We thought the plan to go to New York was a good one. It seemed like the Lord had opened all the doors and we just had to walk through them. We were packed and ready to go. During the night, Katy had some great trouble with her digestive system. Paul and I became concerned that she would not be able to tolerate a nine hour trip. This morning she is no better after all of our attempts to make her comfortable. She made the decision this morning that she could not manage the trip. So rather than leaving for New York we are waiting for a return call from Katy’s doctor at UVA advising us as to what we can do since the Rocephin treatments are no longer giving Katy relief. While we are all dealing with disappointment on some level, we have peace that comes from trusting the Lord is guiding us. We won’t be going to New York, but we’ve already been before the throne of God asking, “Where do we go from here?”

Comments:
  1. Jess Lankford Says:

    Hey guys -
    I’m so sorry that you had to change plans…I know how hard it can be to readust your thinking when you’ve been planning and thinking about something for a while…It does sound like you’ve made a wise decision though. Funny thing - I woke up this morning at 5:00 - thinking, “I wonder if they packed some breathing masks for Katy - her immune system is probably still weak”…Maybe this is just one more way the Lord is looking out for you and protecting you from a possible infection…We’ll never know on this side of eternity - but I do know that He is working everything out for you good!

    We love you all so much and we hope the doctor will have some good advice this morning!
    Jess

  2. Doris Harriff Says:

    I guess everyone (including myself) thought that this trip to New York would be a great thing for Katy. But God knows far more than we do. Dawn, I just can’t help being amazed at your quiet faith in the Lord, no matter what happens. You and Katy are always in my prayers.

    Aunt Doris

  3. Sandy Says:

    I am sorry that the trip wasn’t possible this time. You are all in my prayers as you await advice from the doctor and continue to trust in a loving and gracious God.

    Katy and I can now wait expectantly together for all the news and stories from the conference (and both wish the news were coming on the ticker from CNN so we didn’t have to wait through the weekend!!).

  4. Jennifer S. :-) Says:

    Katy,
    I’m sorry that you couldn’t make it to NY but I know the Lord has His reasons. Please don’t let this discourage you but look to Him in all things.
    Much love and prayers,
    Jen :-)

  5. Lillian Oliveira Says:

    Oh, Katy, I wish I could suffer a night or two for you. I don’t know how you do it or how your family can bear it either, except that I know that the Lord is your refuge and STRENGTH and underneath are the everlasting arms. “He does not willingly bring affliction on the sons (daughters) of men and “In all their affliction, He was (is) afflicted and the angel of His presence saved them.” May His Holy Presence may your room a place of worship and sacrament in your sufferings today. Much love, Aunt Lil

Wednesday, February 07, 2007

Leaving on Friday

I just wanted to give you a quick update to let you know that we had to make a decision to leave on Friday based on our business and finishing up the work week in a proper way. We also checked the schedule for the events in New York and decided that we could still leave early Friday and not miss any of the scheduled activities that we wanted to attend. Katy is still a little hesitant about going based on her physical health, but we are doing everything we can to help her and give her peace of mind. The home healthcare pharmacy dropped off bags of fluid for IV hydration if she needs it over the weekend. We pray she won’t even need it.

The snow stayed around today because of the cold temperatures. The white blanket covered the rolling hills and defined all the peaks and valleys. Living in the Roanoke Valley, being surrounded by the mountains, is a real treat for the eyes in the changing of the seasons. When we go places outside of the valley and drive along the coast or the flat land of the mid-west, we always keep our eyes to the horizon upon our return watching for the hills that eventually turn into the Blue Ridge Mountain Range. We haven’t even left for New York yet, and I’m already thinking about the drive home, back to this beautiful valley and the friends we have met and loved for over twenty years. We’ll be praying for you.

DSC06011-edited.jpg

Comments:
  1. Jennifer S. :-) Says:

    Katy,
    I’m sure you’ll do just fine on your big trip!! With all the love and prayers of God’s people and His hand to sustain you, how can you not be fine? You will have an absolute blast in New York!! :-)
    And I love the picture. Definitely gives meaning to the phrase “Keep the home fires burning.” I know what you mean about the mountains. They are so comforting. I don’t know what I’d do if I had to live somewhere flat. I’ve been raised in hill country and my wish is to stay in hill country. :-)
    I hope you had a good day today and we’ll be praying for you on Friday!!
    With love and prayers,
    Jen :-)

  2. Karen Tillman Says:

    I really hate that you aren’t getting there til Friday, but am elated that you are getting to come at all!!! As for the Roanoke area. If it hadn’t been for Holly and her college status, we wouldn’ve taken ajob there about 2 years ago. I think Roanoke is absolutely beautiful!!! Please be careful driving and have a safe trip!!!
    Love
    Karen Tillman

  3. Sandy Says:

    I will be lifting you in prayer during your travels and the conference weekend. Traveling when you have health problems that can take dramatic twists and turns can be really anxiety-provoking, so I can understand Katy’s hesitancy. I hope that the trip goes as well as possible and that the comfort of friends who understand will ease any anxiety about it once you are there. Take good care of each other!

  4. Sarah Meador Says:

    Katy,

    I’m praying for a safe trip tomorrow and that you will feel very very well over the course of the whole trip! I believe that God can fill you with the strength and energy you need to make the most of your trip and that it will be blessed and enjoyable. I know it will be a beneficial time for all of you. I’m thankful for the opportunity you have to make this journey. Praying you to New York and back home with safety and health! I’ll look forward to seeing you then. :-)
    Love to you,
    Sarah

  5. Lillian Oliveira Says:

    Katy dear, I’m praying, too, and trusting the Lord to make this a wonderful trip for you. I pray that He keep you comfortable on the journey, may you sleep a lot (throught the boring parts!) and feel hungry and be able to eat without pain at meal and snack times. May the blessed Lord help you stay hydrated, May He give you great peace, and great happiness in meeting old friends and making new ones. May the Lord Jesus carry you in His arms, give the doctors there great insight into your special case, and give your Mom and Dad much info, insight and comfort as they meet with others on the same difficult journey. May the Lord bless you and keep you, May the Lord make His face shine upon you! May the Lord lift up His countenance upon you, and give you peace! Peace at day and peace at night, deep and painless sleep. May the Lord who never slumbers nor sleeps keep watch over you, Katy, and preserve your going out and your coming in. With much love, Aunt Lil