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  1. #1
    ABW Ambassador Greg Rice's Avatar
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    Unhappy My Grandson Has Cystic Fibrosis
    My newest grandson Leland, who was born on December 2, was just diagnosed with Cystic Fibrosis. He’s been losing weight instead of gaining it and was down to 5 lbs 8 ozs Thursday. His pediatrician said he had an “abnormal” blood test and wanted him tested at Akron Children’s Hospital so his appt was today.

    I’d like to ask my ABW family to pray for him and send good thoughts his way. We’ve seen firsthand how devastating this can be with the sister of a friend who died at age 22 and only weighed 67 pounds. I wouldn’t wish this on anyone.

    How do you tell a child they have something like this? I can’t even imagine the right words, just the thought of it is breaking my heart. I’ll learn more and be an expert so we support him and get him what he needs to manage this as much as possible. I don’t know what else to do.
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  2. #2
    AM Navigator Geno Prussakov's Avatar
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    So sorry to hear this, Greg. I will certainly keep Leland in my thoughts and prayers.

    Geno

  3. #3
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    Your love & support means more to him & the family than you may realize.

    And I will definitely keep him in my thoughts & prayers.

  4. #4
    15 years and counting
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    I'll send good thoughts his way, Greg and keep Leland in our prayers.

  5. #5
    Visual Artist & ABW Ambassador lostdeviant's Avatar
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    I'm sorry Leland is ill. He and the family are in my prayers.

  6. #6
    ABW Ambassador Boom or Bust's Avatar
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    I'm so sorry to hear about this Greg. Leland and your family are added to my prayer list.



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  7. #7
    Best New ABW Member 2007 sfcom's Avatar
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    I couldn't imagine how it must feel to everyone in the family. I am sorry to hear of this. One positive thing to keep focused on is that medical technology advances at great rates every year. Just think how much faster your computer is today that what your old model was a couple of years ago.

    You are doing the right thing in learning all you can about the disease. He is counting for all around him to use their collective resources to make things as good as possible for him.

    I will definitely pray for him. Keep positive. If you ever need someone to chat with, send me a PM and I'll get you my #.

    -sfcom


  8. #8
    ABW Ambassador purplebear's Avatar
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    I'm very, very sorry Greg A friend's daughter had it quite a few years ago so I've seen what it is, too. Since then I'm sure they've developed more effective ways of treating it, tho.

    I know from the little I've gotten to know you that you've got a very, very close family and that your daughter's gonna have an awful lotta love and support from all of you. I'm really sorry I can't say anything to help you feel better. You'll definitely be in my thoughts and prayers.

  9. #9
    Affiliate Manager Howard Gottlieb's Avatar
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    Greg I pray for doctor's caring for your grandson - that they will have super natural insight and wisdom in their treatment. I pray for peace for you and your family knowing that God is in control and placing your trust there.
    I would rather live my life as if there is a God and die
    to find out there isn't, than live my life as if there
    isn't and die to find out there is.

  10. #10
    Affiliate Network Rep ayakobing's Avatar
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    So sorry to hear about this. I am a mom and I cannot even imagine how devastating this is to your entire family. I will keep Leland and your family in my thoughts and prayers.

  11. #11
    ABW Ambassador writerguy's Avatar
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    Quote Originally Posted by Greg Rice
    How do you tell a child they have something like this? I can’t even imagine the right words, just the thought of it is breaking my heart. I’ll learn more and be an expert so we support him and get him what he needs to manage this as much as possible. I don’t know what else to do.
    Greg, you, your family, and especially Leland, will be in our prayers. Shirley and I felt great pain and fear the first three months of my daughter's life. She had been born with a rare intestinal condition that was mis-diagnosed and kept her vomiting and losing weight for almost three months before we finally went to a doctor who got the diagnosis right. A fairly simple, low-risk surgery resolved her problem and it was like the sun began shinning in our world again.

    I can only imagine how hard this is for you and your entire family. You are indeed in our thoughts and prayers.
    Generate more fake news.

  12. #12
    ABW Ambassador 2busy's Avatar
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    So sorry to hear this news Greg, your family and especially little Leland will be in our prayers.

  13. #13
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    When my sons were diagnosed it was devastating, but it was a relief to know why they weren't developing like they were supposed to. (They didn't have CF). We discussed it as a family, Chris was only 2 and his brother 1, so they just grew up with it. Liz grew up with her brothers at physical therapy and doctors appointments and it was just part of life.

    My prayers and thoughts go out to you. You are on the right path. The doctors didn't want to tell me my boys diagnosis, I pressured the doctor on the phone and after he told me I went to the library and by their next doctor's appointment I actually almost knew more than him about their disease. It was/is fairly rare. He asked *me* for copies of the articles I found in my research. Through the years my research skills helped me find many resources and I was blessed with a great physical therapist that didn't limit her treatment to what was supposed to be allowed for their disease but that just worked for them. This gave them a better quality of life than many other children with the same disease.

    My point in sharing this is to encourage you to seek knowledge about the disease, to think outside the box, to not be limited by recommended treatments, to find the people that you feel comfortable with dealing with for his care. Find the people with positive attitudes and that tell you the truth.

    Pass all of this along to your children, I don't know if I can be of any other help, but if you or son or daughter wants to call and talk to me I would be glad to lend an ear and at least talk about my experiences. They are different, but they are the same.

    Deborah Carney
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  14. #14
    Life is Supposed to be Fun! Rexanne's Avatar
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    Greg,

    My heart goes out to you and your family. Leland will be in our prayers every night.

    Peace,

    Rexanne

    Rexanne.com
    Loving Everyone's Child Creates Magic


  15. #15
    ABW Ambassador Greg Rice's Avatar
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    Thank you all for the prayers, thoughts and support!

    I am hopeful that research will find a cure or at least be able to increase his life expectancy more than 22 years old. The Cystic Fibrosis Foundation just became my #1 charity. There has been improvement in treatment the past few years, though no cure, so that may help him. He has a lot of lifestyle changes ahead of him, first to gain weight, but he's only been around for 3 weeks so his habits shouldn't be too hard to break I wish I could just buy something that will make this go away and he could live normally. Maybe soon.

    Thanks sfcom, I just may take you up on your offer.

    I knew you were a superwoman Deb and your testament just proves it. Having to deal with something like this x2 must have taken a LOT of strength.
    Greg Rice Affiliate Program Management
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  16. #16
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    I'm a huge disability rights advocate, in this community it isn't something that comes up. My son's outlived their life spans and Dan told people he cheated the grim reaper 3 times.

    It's all about attitude... not to lessen the gravity of the situation, but it really is all in how you approach things.
    Deborah Carney
    TeamLoxly.com BookGoodies.com ABCsPlus.com

  17. #17
    Advocate mellie's Avatar
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    I will definitely keep Leland and your family in my prayers. I know there has been tremendous progress in the treatment of cystic fibrosis, especially over the last couple of years.

    I have two children with health challenges. My advice for your children and for you is to take a proactive approach. Learn all you can about Cystic Fibrosis and make sure his doctors are informed. I learned to test doctors and their staff over the phone and then interview in person before they examine my children.

    As for telling a child about their health issue, while difficult for parents, children are more accepting. Children incorporate and accept these challenges into their life. Knowledge at an early age will also empower a child as they get older. I know Leland is just a newborn but as he gets older remember that Cystic Fibrosis is just a part of him, it is not who he is.

    I too offer to speak with you or your children about what it is like to have a child with special needs. Like Deb said, while it is different, it is still the same. Support from parents facing similar challenges is important, it helps you maintain a feeling of normalcy.
    Melanie
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  18. #18
    Affiliate Manager sunnypi's Avatar
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    Greg,

    Just wanted to send my prayers and thoughts out to you and your family too. I hope 2009 and beyond are filled with beautiful things that you can share with Leland and your family.

    :hugs:

  19. #19
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    Greg, I'm so sorry to hear of this news. I know a woman who's in her early 40s who has CF.[img]vizion/editor/separator.gif[/img]This is a disease that has seen huge gains made in treatment and longevity and I hope that by the time your grandson reaches adulthood it will be one of those diseases that is curable.

  20. #20
    ...and a Pirate's heart. Convergence's Avatar
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    Greg,

    My positive thoughts and energy go out to your grandson.

    As a husband who's wife has had three brain surgeries for two Ependymoma brain tumors I have learned that a lot can be accomplished with positive thoughts and energy. We have done fantastic things with holistic treatments, nutrition, and positive thoughts - Things that made even our last neurosurgeon take notice.

    Again, my positive thoughts and energy to Leland.

  21. #21
    Super Dawg Member Phil Kaufman aka AffiliateHound's Avatar
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    So sorry to read about this situation, and our thoughts and prayers are with you, your grandson and your entire family as you all deal with this.

    I can only slightly expand on the thoughts expressed so well by loxly, Writerguy, and Convergence - do not take the word of a single doctor or medical group without second, third, forth, and more opinions, plus your own research, and the exploration of alternatives to the American medical establishment.

    As many others here have related, my daughter too has suffered from serious medical problems, her's made so much worse by incompetent medical personnel (but considered to be some of the very best in their fields), incorrect diagnoses, blatant medical negligence, and just plain apathy to what proved to be extremely serious problems. Just in the past couple of years, she has found the best relief in a long time for some of her problems, with holistic practitioners.

    In my prior career, I dealt first hand with thousands of injured people, seeing many benefit from standard medical care, and others who did not. Keep a constant eye out for not only the latest advances, drug trials, and nascent ideas within and outside of the medical establishment, but also closely monitor your grandson's ongoing treatment, asking questions as to Why? Why not? and What else?
    Since June 10, 2012 a vegan aarf but still writing the Hound Dawg Sports Blog
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  22. #22
    ABW Ambassador ladidah's Avatar
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    Greg, sorry to hear about your grandson. I do not have any knowledge or experience to offer you but Leland will be in my thought and prayers. It breaks my heart to hear about kids being sick and ill, especially so young and little.

    Leland is a beautiful name btw.

  23. #23
    ABW Ambassador Greg Rice's Avatar
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    Thank you all! I wish he was old enough right now to see the love for someone you don't know.

    Loxly, AffiliateHound and Mellie, I will definitely stay involved with his health care. I'm glad your sons, Deb, did better than expected. My side of the family doesn't fare as well with my dad passing away at age 61, my sister at 48, my mom at 73 and her brother at 71, about 6 months before she passed away. Both of my grandparents lived well into their 80s and 90s so I'm not sure what happend with their kids. I don't have much success with doctors myself and could have had a couple lawsuits to prove it but in one case I decided not to and in the other my x-rays mysteriously disapprered when my lawyer requested a copy.

    Leland's doctor is the same one who sees my nephew for CF. They say he's good but people also said the same about Leland's pediatrician, who didn't tell us his blood test was abnormal until last week. There are some great things doctors can do and there's also some bad things so I won't hesitate to ask questions.

    Rhea, that's good to hear! My experience is they die young and they don't go gracefully to say the least so it's encouraging to know the outlook can be better than I thought.

    I just may take you up on the offer Mellie. Both of our kids were very healthy with only typical issues so this is new territory for me. Being very protective just makes it more difficult.
    Greg Rice Affiliate Program Management
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  24. #24
    ABW Ambassador Greg Rice's Avatar
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    Quote Originally Posted by Convergence
    Greg,

    My positive thoughts and energy go out to your grandson.

    As a husband who's wife has had three brain surgeries for two Ependymoma brain tumors I have learned that a lot can be accomplished with positive thoughts and energy. We have done fantastic things with holistic treatments, nutrition, and positive thoughts - Things that made even our last neurosurgeon take notice.

    Again, my positive thoughts and energy to Leland.
    This is very scarey stuff. It's one thing to have surgery but brain surgery 3 times? It sounds like you're both fortunate. Thanks.
    Greg Rice Affiliate Program Management
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  25. #25
    ABW Ambassador VampireSkunk's Avatar
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    So sorry, Greg.

    "I wish he was old enough right now to see the love for someone you don't know."

    He can feel it, Greg. Add mine as well.

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