Thursday, October 19, 2006

New Direction

Katy’s Gastroenterologist came in this morning with results from recent bloodwork. She is not improving, in fact some of the levels were worse. He feels it is time to transfer her. The question is “Where?”. There is a short list of possibilities, but at this point no direction. Paul will be doing some research today and making some phone calls to find the best place for Katy. Please pray for wisdom for Paul & Dawn as they make this decision. Please continue to pray that Katy will not lose hope that things will be better. She told me during her desperate days when she was first admitted that she had lost all hope. And it was hope that pulled her out of her desperate state. That hope can only come from our Father. And He has used many of you as messengers of hope to Katy.

Psalm 62:5
Find rest, O my soul, in God alone; my hope comes from Him.

Isaiah 40:31
But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint

  1. Rivas Family (From Spain) Says:

    Dear Campbells;
    I am writting you in order to give you some news that my brother (Fernando) has been able to find. We have been in touch with the Strange Illness Federation (here in Spain) and Fernando was told that in Europe there´s not knownledge about the H.P.S. but they gave us the contact in Canada where they have some cases, the web site is:
    And the telephone numbers are:
    800 473 23 10
    603 887 23 10

    Perhaps you have already gotten this information before.
    Take care.
    Esther María
    Fernando Rivas

  2. Sheena King Says:

    Hi Katy:

    I have been reading your site daily and praying for you all. HOld on to all the hope and family you have and continue to fight. We are all behind you 100 %, I know that is not always easy to do but with good friends and family as you have you can do anything. Keep on fighting the good fight.


  3. Barbara Walker Says:

    Hi Katy and Campbells,

    I think it is so positive that you will be transferred to a better facility. Roanoke is good for the ordinary, but there are better places for the diseases that are different.

    Katy, your Lord told you that He had more things to show you so hang on to that hope. I believe you have been a divine instrument from God for yourself and to share these beautiful things with others. I’m just so sorry that you’re having to go through so much pain.

    We are praying for you. Hang in there!!

    Love in Christ,


  4. Aleah Says:

    If nothing else, continue to know how much you inspire so many of us. How many would have given up this fight long ago? I think it’s safe to say most of us are not strong enough to handle the burdens you have been given. Rest in the knowledge that God gives us only what we can handle, not in the sense that we will never have to strive to persevere - as you well know - but that the tasks before us are never beyond the capability of our Savior. Cling to Him as you always do - cling tight and remember the promises and words He gives us in the Bible and the words He spoke to you, Katy. My prayer is that they fill your heart so full that you can no longer feel the pain. You are such a blessed child of God - please know what an inspiration you and your family are to all of us.

    My prayers and thoughts, as always, are with you tonight,

  5. Shari & Maurizio Cucci Says:

    I remember you at Rainbow Forest. You were always giving of your time to those little ones. You also took crafts under me when I was homeschooling my children. Never give up hope. There are many out there still for you to touch with your life. We saw Dan & Julie in Roanoke Wednesday and they were telling us about you. There are many things we do not know in life but one thing is God has a plan for each of His children. You are definitly one of his. We will pray for and will ask others at church to also pray.
    Love in Christ,
    Shari Cucci

  6. Karen Tillman Says:

    Dear Campbell family,

    Please know that we are praying for you, healing for Katy, and guidance as to where to turn next. Will write more later as I am getting ready for my husband to have some oral surgery tomorrow or actually this morning!!! :)
    Karen Tillman Regional Coordinator Mid Atlantic USA
    Hermansky-Pudlak Syndrome Network Inc
    NC phone:336 954 3604
    NY office 1.800.789.9477
    my email:
    my website:

  7. Aunt Carrie Says:

    Dear Katy,
    I will pray that if the move is necessary, it improves your outlook. Of course, the Comforter will be with you wherever you transfer. I hope you continue to feel the peace granted by your special connection; although, I hope the intense suffering that requires it abates.

    The posts regarding the heavenly vision and the singing reminded me of a Claire Lynch song that Laurel sings. I think she probably did not sing it when we gathered this summer. Although it is a beautiful song (and lovely rendered) I can barely stand to hear her sing it. (especially now; subject matter a little too close.) A part of the song contains a vision of heaven with scenes very like the ones you described to your family:

    I’ve come to the river pure water of gold
    It flows from an ocean of glass
    It touches my body and comforts my soul
    Oh I will be healed at last
    But I can hear singing, such glorious tunes,
    From those who’ve already crossed o’er
    And colorful rainbows are shedding their hue
    Like nothing that we’ve seen before.

    Ah well, it is a song for a day when you are feeling much much better.

    When I go for a walk at lunch I walk by a stream. I have several opportunities to cross bridges over the stream. This time of year you can see bright pink salmon spawning or swimming and splashing. It is getting toward the end of the season and the rain we had has risen the creek a bit so it was harder to see them today.

    Love and prayers, hope and courage,
    Aunt Carrie

  8. Trisha Ferris Says:

    The Psalm for Oct. 20

    May the Lord answer you in the day of trouble!
    May the name of the God of Jacob protect you!…
    May he grant you your heart’s desire and fulfill all your plans….
    Some trust in charriots and some in horses, but we trust in the namle of the Lord our God.

    I know transfering to another hospital has it’s difficulties, but I’m so grateful for the amazing way that the Lord has renewed your desire to live & to continue to seek treatment. The Lord wants you around for a purpose & the rest of us are happy as clams about that. (How would anyone know if a clam is happy?) Kenneeth & I will help in any way we can to get you to the best place with the best doctors. We love you. I’m still hoping to see you before the move takes place. Right now I’m revovering from a nasty bug & wouldn’t bring it anywhere near you. I’m so anxious to see your sweet face!

  9. Linda Kochendarfer Says:

    As I was driving to work today I was reveling in the beauty of the morning sun on the colored leaves and the wind stirring and rustling the trees - it was an extraordinary site! I am hoping that even in your transfer you will enjoy seeing the out of doors. Though it has been said so often, we are praying for you and remembering you each day, as we do your family. I thought the news about Candice was encouraging and hope you’ll be able to talk to the twins before long. We love you, Katy and long to see you home as soon as possible.
    Mrs. K

  10. Sandy Says:

    Please know that many thoughts and prayers continue from me and everyone in the HPS group. (I don’t have HPS but have the platelet disorder associated with it, plus other health problems.)

    I pray that God guides you to exactly the right next step in terms of medical care. There is hope!

  11. Linda Kochendarfer Says:

    When I was researching the hymn stories for Sunday’s bulletin, I ran across this quote from Elizabeth Prentiss (she wrote “More Love to Thee”). She had many health issues her entire life yet she was said to have a keen sense of humor (just like you!).
    “Much of my experience of life has cost me a great price and I wish to use it for strengthening and comforting other souls.” Katy, that is what you do each day for us that love you - your sweet spirit brings us strength and comfort. Sending you a smile right now.
    Mrs. K

  12. Kendall Pelish Says:

    Hey Pal,

    I pulled an all-nighter Tuesday and I’ve been running a fever ever since. This has helped me to realize that I have absolutely no idea what you are going through. My pain is manageable and yours is extreme. Therefore, the encouragement I give you comes from those that do know your pain.
    Listen to the apostle Paul’s testimony from 2 Cor. 11 about his sufferings; “23 Are they servants of Christ? I am a better one—I am talking like a madman—with far greater labors, far more imprisonments, with countless beatings, and often near death. 24 Five times I received at the hands of the Jews the forty lashes less one. 25 Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea; 26 on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers; 27 in toil and hardship, through many a sleepless night, in hunger and thirst, often without food, in cold and exposure. 28 And, apart from other things, there is the daily pressure on me of my anxiety for all the churches. 29 Who is weak, and I am not weak? Who is made to fall, and I am not indignant?
    Paul knew intense pain and what it was like to be on the fringes of life. I know he can identify with you because his reaction to all of these sufferings sounds a lot like yours.

    Listen to what Paul says in Philippians chapter 1 “Yes, and I will rejoice, 19 for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, 20 as it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death. 21 For to me to live is Christ, and to die is gain. 22 If I am to live in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell. 23 I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better. 24 But to remain in the flesh is more necessary on your account. 25 Convinced of this, I know that I will remain and continue with you all, for your progress and joy in the faith, 26 so that in me you may have ample cause to glory in Christ Jesus, because of my coming to you again.�?

    Do you hear the parallel between his situation and yours? He has actually been “hard pressed�? in making the decision of whether to live or die. You now know first hand how sweet is the gain of death, but please for the sake of all of us follow Paul’s argument. He chose to stay so that people would have great reason to glorify the savior! Katy, you are being used wonderfully. Please know that there are many people who are filled with tears and joy for Jesus Christ because of his grace in letting you taste the Heavenly realm. Be assured when the time is right you will be there again, but that time is not now. You know this because Jesus told you so. Think about your life story and how many mothers and daughters you and your mom have inspired. Those are just the big details. Look at the rest of the comments on your blog for examples of people you have specifically touched. Know that I would not be a Christian if it weren’t for your family’s testimony of Christ. Take hope in the glorious work the savior of the world is doing through you.
    Take hope in Christ.

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