September 2009 > Day +194 (Revised)

Day +194 (Revised)

Nick's test results came back good. His Doctors have agreed to start weening him off cyclosporin and a few of his other meds. This process will take about 8 weeks. After he has been off these meds, they will test his immune systems. All indications say that he is making good progress and is well on his way to that first year hurdle.

On another note, it has been a real hard weekend for the BMT unit down in Cincinnati. On Friday, Sandy's friend Kelly let her know that her son Troy lost his battle with his disease. Troy had been admitted for his BMT approximately 2 months before Nick.

Yesterday, Kari McSwiney, a 21 year old BMT patient lost her battle with Leukemia. She was admitted one year ago for her BMT.

Finally, Baby Andrew Akin lost his battle with HLH. Andrew had come to Cincinnati for his third BMT. First indication was that the third one finally was working. He got his transplant about one month after Nick. Recently, he has had some compilations. This family has another son Matthew that has just started the BMT process. He is day +8. Matthew has the same disease as Andrew. I cant imagine how this family is staying focused on all the things the caregiver must do to have a successful transplant.

*** One of the other BMT family's in Cincinnati made this great YouTube video of Andrew. Attached is the link http://www.youtube.com/watch?v=SC8Xfc2dDtQ
(fyi, tha family decorated his room like a boat. they called his room (boat) the Merry Marrow. The song is perfect.)*****

Needless to say, we are extremely thankful for the blessings God has graced Nick and our family with. All the families that we got to know, have lost their battle. Nick continues to stand tall in his battle, defeating all the challenges, and has done so with minimal pain and discomfort. We have said many times before that God is great. I'm not sure great is the right word. I'm not even sure there is a word in dictionary for what he is and what he has done for our family. For right now I am just going to say, God is everything to our family.
Posted: 9/6/2009 10:12:06 AM by Dan | with 218 comments
Comments
Haley B
Like your family is sayinng, Nick you indeed are extremly graced and everyone is extremly thankful for everything that is happening now. As for Kari, Troy, Andrew and Matthew... Im really sorry and they are in a better place now, pain free. Hope everything continues to stay well and I hope to see you in school soon!!!
9/6/2009 3:38:16 PM
Annette
Dear Dan; My heart sank at the news of all the losses over this weekend. I can scarcely imagine the sadness of those who have battled for such a long time. My deepest sympathies and my most heartfelt condolences go out to those who must now come to grips with their losses. I guess the only consolation that really makes sense to me is that absent from the body is present with the Lord. The Lord must have needed some special angels, and called his weary children home. It is my prayer that the passage of time, and the warmth of loving memories will soon ease the sorrow of all of this loss. I continue to lift each of these families up to the Lord, and I also continue to praise Him for his many blessings for Nick and your family. I also continue to ask for guardian angels to surround you all, and to shield you from any negative results of the weening process. My thoughts and my prayers are surely with you...tonight and always. Love in Christ, ~Annette
9/6/2009 8:44:02 PM
Annette
Dear Dan, Sandy, Nick, and Family; what a BEAUTIFUL tribute to a lovely child! Thank you for including the link. I continue in my prayers for those who have suffered the loss of their dear loved ones, and also continue to praise the Lord for Nick's great strength and his continued good reports. Stand strong, Nick; and keep up the fight. Your road to complete recovery gets a little shorter every day...and your new bone marrow cells grow just a bit more, and strengthen you just a little more with each and every day. Asking the Lord to surround you with guardian angels, and to keep you safe and healthy. My love in Christ, ~Annette
9/9/2009 10:53:49 PM
Annette
Dear Dan, Sandy, Nick, and Family; The sunshine came streaming through the windows of our Uniontown home, and I was reminded of the passages of the scriptures that speek of the glory of the Lord. My mind also goes to Mathew 5:16, which says : Let your light so shine before men that they may see your good works, and Glorify your Father, which is in heaven. This just touched me in such a special way, because I sense that the Lord is doing such a mighty work in NIck, and that there is such a powerful testimony in all the Lord is doing here! You truly do live this passage of scripture, and you have touched those of us who have prayed with you througout these difficult times. Just wanted to pass on my thanks for your willingness to share, and send you all my very best wishes for a bright and beautiful day. You remain in my thoughts and prayers. Love in Christ, ~Annette
9/11/2009 9:28:48 AM
Annette
Dear Nick; I sure do hope tonight finds you having a wonderful time with your family. I continue to hold you close in my thoughts and prayers, and am continuing to ask the Lord for guardian angels to protect you and keep you while the doctors begin weening you off of the meds. I look foreward to the day when we all celebrate your great Victory over this illness! Thought I would send you my best wishes, and a written hug...and someday I will actually share a real one with you. Wondering how Lori is doing with her battle, and sending my very best wishes to her, too. Just wanted to let all of you know that we who care for you are still out here, still praying, and still believing for God's great healing. Love in Christ, ~Annette
9/19/2009 8:41:20 PM
Annette
Dear Nick; I chedk this blog almost every day, and try to keep up with all the latest news. I know that you must be really busy with your school work these days, and I just wanted to send you my best wishes. I hope all is well with you, and with your entire family. I think a lot about how this has affected each of you, and I still stand amazed at the way you have all held on to your faith in the Lord, and your love for each other, and taught those of us who are following your blog what true strength is all about. I just wanted to say that I continue to keep you all close in my thought and my prayers, and that I am wishing you a bright and beautiful day, and many more to follow. With each passing day, you are SOOO much closer to a complete victory. GOD IS GOOD!! Love in Christ, ~Annette
9/23/2009 11:20:32 PM
Annette
Dear NIck; With the beginning of a new season, the thought came to me that you, too, are entering a whole new season in your life. You are now in a season of healing. I am so very thankful to the Lord for his continued healing, and for your continued health. I hope today found you and your family enjoying the bright and beautiful sunshine, and the crisp, clean Fall air. I wish you all an evening filled with rest and refreshment, and a day ahead filled with the Lord's richest blessings. Love in Christ, ~Annette
9/27/2009 9:00:59 PM
Annette
Dear Nick and Family; I said a prayer for you today, And asked the Lord above...to circle you in sunshine, and shower you with love. I asked for guardian angels to see you through the day...and go before each step you take, all along the way. I thanked Him for my Savior, and I thanked Him for His love, And I thanked Him for the gift of you...a blessing from above. So if you fee a presence, and wonder who is there...just know it's guardian angels, who came to answer prayer. Wishing you all a bright and beautiful morning, and a day filled with the Lord's richest blessings. Wrapping this up in a great big hug! Love in Christ, ~Annette
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Keep your broken arm inside your sleeve.
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You can learn as much - or more - from one glance at a private space as you can from hours of exposure to a public face.
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Genius is one per cent inspiration, ninety-nine per cent perspiration.
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If we fall, we don't need self-recrimination or blame or anger - we need a reawakening of our intention and a willingness to recommit, to be whole-hearted once again.
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There is nothing more dreadful than imagination without taste.
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To believe in God or in a guiding force because someone tells you to is the height of stupidity. We are given senses to receive our information within. With our own eyes we see, and with our own skin we feel. With our intelligence, it is intended that we understand. But each person must puzzle it out for himself or herself.
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We think in generalities, but we live in detail.
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The moment we begin to fear the opinions of others and hesitate to tell the truth that is in us, and from motives of policy are silent when we should speak, the divine floods of light and life no longer flow into our souls.
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Use what you have to run toward your best - that's how I now live my life.
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I am doomed to an eternity of compulsive work. No set goal achieved satisfies. Success only breeds a new goal. The golden apple devoured has seeds. It is endless.
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It's innocence when it charms us, ignorance when it doesn't.
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Real love is a permanently self-enlarging experience.
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Make a decision, even if it's wrong.
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Be honorable yourself if you wish to associate with honorable people.
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Fall is my favorite season in Los Angeles, watching the birds change color and fall from the trees.
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The man who is swimming against the stream knows the strength of it.
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Typos are very important to all written form. It gives the reader something to look for so they aren't distracted by the total lack of content in your writing.
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Typos are very important to all written form. It gives the reader something to look for so they aren't distracted by the total lack of content in your writing.
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Everything of importance has been said before by somebody who did not discover it.
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Good breeding consists of concealing how much we think of ourselves and how little we think of the other person.
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Have patience awhile; slanders are not long-lived. Truth is the child of time; erelong she shall appear to vindicate thee.
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The perfect bureaucrat everywhere is the man who manages to make no decisions and escape all responsibility.
10/20/2009 3:10:26 PM
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Even if you're on the right track, you'll get run over if you just sit there.
10/20/2009 3:10:48 PM
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The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible.
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Self-importance is our greatest enemy. Think about it - what weakens us is feeling offended by the deeds and misdeeds of our fellowmen. Our self-importance requires that we spend most of our lives offended by someone.
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Patriotism is your conviction that this country is superior to all other countries because you were born in it.
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A good man would prefer to be defeated than to defeat injustice by evil means.
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We thought, because we had power, we had wisdom.
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I'm moving, but don't worry! [Someone once] told me we're all on the same planet, so I'll be okay!
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All men are frauds. The only difference between them is that some admit it. I myself deny it.
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There are more tears shed over answered prayers than over unanswered prayers.
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I like an escalator because an escalator can never break, it can only become stairs. There would never be an escalator temporaly out of order sign, only an escalator temporarily stairs. Sorry for the convenience.
10/21/2009 5:23:31 AM
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When you close your doors, and make darkness within, remember never to say that you are alone, for you are not alone; nay, God is within, and your genius is within. And what need have they of light to see what you are doing?
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I find it rather easy to portray a businessman. Being bland, rather cruel and incompetent comes naturally to me.
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Every man, wherever he goes, is encompassed by a cloud of comforting convictions, which move with him like flies on a summer day.
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Never make a defense or an apology until you are accused.
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The reason grandparents and grandchildren get along so well is that they have a common enemy.
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One of the keys to happiness is a bad memory.
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The first duty of a revolutionary is to get away with it.
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Love truth, and pardon error.
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It's the soul's duty to be loyal to its own desires. It must abandon itself to its master passion.
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Ask a deeply religious Christian if he?d rather live next to a bearded Muslim that may or may not be plotting a terror attack, or an atheist that may or may not show him how to set up a wireless network in his house. On the scale of prejudice, atheists don?t seem so bad lately.
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A man can do all things if he but wills them.
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The function of science fiction is not always to predict the future but sometimes to prevent it.
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Walking is the best possible exercise. Habituate yourself to walk very far.
10/22/2009 8:59:58 AM
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I was the kid next door's imaginary friend.
10/22/2009 9:01:11 AM
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You can't separate peace from freedom because no one can be at peace unless he has his freedom.
10/22/2009 9:03:57 AM
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Reveal not every secret you have to a friend, for how can you tell but that friend may hereafter become an enemy. And bring not all mischief you are able to upon an enemy, for he may one day become your friend.
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10/22/2009 9:20:58 PM
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10/22/2009 9:21:30 PM
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'Never put off until tomorrow what you can do today.' Under the influence of this pestilent morality, I am forever letting tomorrow's work slop backwards into today's, and doing painfully and nervously today what I could do quickly and easily tomorrow.
10/22/2009 9:23:01 PM
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What if this weren't a hypothetical question?
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It is a good rule in life never to apologize. The right sort of people do not want apologies, and the wrong sort take a mean advantage of them.
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One of the keys to happiness is a bad memory.
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I am not young enough to know everything.
10/22/2009 9:29:06 PM
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When we lose one we love, our bitterest tears are called forth by the memory of hours when we loved not enough.
10/22/2009 9:29:15 PM
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If one morning I walked on top of the water across the Potomac River, the headline that afternoon would read "President Can't Swim".
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Feeling grateful to or appreciative of someone or something in your life actually attracts more of the things that you appreciate and value into your life.
10/22/2009 9:37:04 PM
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When you make a mistake, don't look back at it long. Take the reason of the thing into your mind and then look forward. Mistakes are lessons of wisdom. The past cannot be changed. The future is yet in your power.
10/22/2009 9:38:19 PM
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Absolute faith corrupts as absolutely as absolute power.
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