Sunday, June 9, 2013

The Teen's Fight to Cure Sickle Cell Anemia

This isn't my usual budget career style post. This is about my 16-year daughter's choice to undergo an unrelated bone marrow transplant in an effort to cure her severe Sickle Cell Anemia.

I took this head shot for her drama class actor portfolio.
The bracelet is handmade by the talented Jean at dross into gold.

For those of you who may not know what Sickle Cell Anemia is, it's an inherited blood disorder that creates abnormal red blood cells that aren't healthy, round, and viable for months, but instead are sticky, sickle-shaped, and short-lived. They ravage the body when they get stuck in the capillaries, and obstruct the flow of oxygen, in severe cases causing excruciating pain and organ damage.



The Teen's disease was adequately managed for many years by an oral chemotherapy drug that increased her body's production of fetal hemoglobin. It stopped working sometime in the last year. She had a mini-stroke, and now has to undergo a monthly exchange transfusion to decrease her risk of another stroke. Her disease tends to focus on her lungs; she's had several attacks of Acute Chest Syndrome in the last 18 months. Without a cure, her chances for a healthy life, even with exchange transfusions, beyond a decade or so are not good. Her doctors recommended the bone marrow transplant to give her a chance at a normal quality of life. The outcome isn't guaranteed. We're experiencing a weird mix of hope, anxiety, and dread for the grueling year ahead.

I finally found the words to start her CaringBridge site back up, so we can keep family and friends (real and virtual) up to date. We're also trying to raise awareness of Sickle Cell Anemia, and share the experience of the new cutting-edge medical advances that may offer the Teen, for the first time in her life, a chance at a cure. If you want to follow along, here's the link:  http://www.caringbridge.org/visit/keeceesunnysite.

I'm going to share this link at Patti's wonderful weekly Visible Monday feature at Not Dead Yet Stylehttp://notdeadyetstyle.blogspot.com/. The Teen is visible, beautiful, and vibrant, even while suffering from Sickle Cell Anemia.

For more information about Sickle Cell Anemia, please see Sickle Cell Disease Association of America, Inc., http://www.sicklecelldisease.org/index.cfm?page=about-scdaa and the American Sickle Cell Anemia Associationhttp://www.ascaa.org/.

30 comments:

  1. Thank you for sharing this Lynne, and for the wonderful Caring Bridge site. All the best healing thoughts are going to KeeCee in the adventures ahead, and strength/energy for all of you. Illness sucks! But love is fabulous xoxoxoxo

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  2. Thank you for sharing the link to The Teen's site, and giving more info on Sickle Cell Disease. I hope you all have a great trip to SF. Sending you much love from my bit of the world xxx

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  3. Thanks for posting the Caring Bridge site - you and The Teen and your family have been so much on my mind and in my heart. What an amazing young woman she is - stunning photo, and gorgeous Jean-made bracelet! xo

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  4. Thank you for sharing this. I'm holding you, The Teen and your entire family in my thoughts and prayers, and hope the bone marrow transplant is successful.

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  5. What as amazingly beautiful photograph, Lynne, and what a stunning girl. All my thoughts and love and good wishes are going to KeeCee, and to you all. xxx

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  6. my love and prayers for your year ahead are with you. and she she is beautiful! so sorry you have to go through this xxxx

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  7. Wow, what a challenge this must have been for all of you. Good vibes to the Teen!

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  8. Have fun in San Francisco. It's a lovely place to visit with activities, sights and excitement. Best wishes for your daughter and her health.

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  9. She is stunning...and I am so sorry about her illness. I will add her to my daily prayer list. I truly hope the transplant brings healing. She is a gorgeous young woman who deserves a better life. I will pray.

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  10. I am keeping KeeCee and your family in my prayers!!

    Desiree of Pullupyoursocks and I were just discussing those with chronic illnesses and their loved ones this week. We are wearing a black and white outfit in support...stop by my blog to see details if you get a chance.

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  11. Lots and lots of prayers to you guys. I wish for the best possible outcome. Thanks for giving us a way to keep up with KeeCee. Lots of love to you guys.

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  12. Caring Bridge is a safe, caring site. We had a friend and family that used this site to post updates on all that was happening. My thoughts for your teen are in my heart. I hope that all goes well with her treatment. Gentle hugs for all of you. xxx

    Barbara @ www.allmylivesnow.com

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  13. Thanks for sharing and my heart goes out to your daughter and you.

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  14. So, so many hugs to you and your family Lynne. I am certainly hoping for the care that your beautiful daughter deserves and the peace that you and your family deserve. This is a beautiful shot and your daughter is a beautiful girl. I am glad you shared this. I always think of you and your family.

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  15. I caught my breath when I opened up your post. The photo is stunning. She's absolutely lovely, and I'm so happy to see how the bracelet looks on her wrist. I appreciate all the information you provided and will be adding my prayers to those of everyone else. I'll be checking in with Caring Bridge to stay abreast.

    Love to you all.

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  16. The Teen looks lovely in that picture. I hope the treatment will work for her and that she can live a normal life, because she looks like she will rock it!!

    Thanks for the information about Sickle Cell Anemia, and good luck and hugs as you go forward!

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  17. She's a beautiful and brave girl, Lynne. A credit to a brilliant mother. xxx

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  18. I wish for healing, peace and strength for your family.

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  19. With you all the way as you begin this journey of healing. The Teen is a beauty and love the bracelet created by Jean. Sending loving support!

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  20. She's such a beautiful and amazing girl - I've read your Caring Bridge posts and I'm so glad to hear you'll be traveling together and enjoying time as a family. Thinking of you as always and sending many hugs and prayers as you begin this next journey!

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  21. Hope she gets well - so young and so beautiful you think why does it happened - tks for sharing -
    Will be sending positive vibs your way -

    Arianex

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  22. You and your family are in my prayers, dear lady. You have a very brave daughter!

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  23. Your daughter is beautiful Lynne. I can't imagine what a tough time you and your family are going through. Sending big hugs to all of you :) Heather

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  24. Oh, kiddo. Thank you for keeping us all abreast of the situation, Lynne. I'm keeping hope in my heart for the Teen and for all of you, and I'll be thinking of you while you're having your San Francisco trip not too far from me!

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  25. Prayers are headed your way as you start this new journey
    Brett

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  26. I am so sorry to hear that your family is going through this. My Aunt's husband has sickle cell and he's been in and out of the hospital since I've known him. I didn't know that bone marrow transplant was an available treatment. She's beautiful by the way. I'll keep you all in my thoughts and prayers.

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  27. The Teen, you are absolutely gorgeous, and we are on the brink of so many cures that each and every day can make a difference. Many many hugs of encouragement and hope. Thanks for this post, Lynne.

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  28. Your child is so lovely, Lynne. Sending all the force of will, prayers, and good wishes we can muster out here, all in service to the perfect outcome of this big, challenging process she's about to go through. You too, all of you.
    Hang in, kids.
    Thank you for the link, as well.

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  29. Oh, Lynne! I have been slowly winding my way back through friends' blogs after being away/busy for awhile, and here I find that I have missed this most important post! Your teen is VERY beautiful and vibrant. My thoughts are with you all as she goes forward with this. I hope it's completely successful!!

    xoxo
    Lynn

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  30. My thoughts are with you. I have taken care of many a sickle cell patient, and it is not an easy path. Sending positive vibes your way.

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