Monday, June 18, 2012

For Calvin (and his Mama)

Several months back I was hunkered down on the couch, reading one of Sarah's hand-me-down Glamour mags like I am known to do. For the second time ever, I found something of real significance. (This was the first thing.)

Hidden among many heaving cleavages, a needle in the voluminous hairdos, was this article, about a woman fighting for her life, desperately in need of a bone marrow match.

I don't know what was in the air that night, but before I trashed the trashy mag, I tore out Krissy's story with big plans to sign up for the national bone marrow registry. Glamour magazine said it was free and easy, and they should know.

Two months later, I found Krissy at the bottom of a pile and finally did something about it. I went here and filled out the form.

After the kit arrived, it took all of five minutes to read the instructions, swab my cheek a few times, seal it all back up, and mail it back in a paid-postage envelope.

Just like that, I'm on the registry.

It felt strangely good.


Two weeks later, we made a pit-stop at Cincinnati Children's Hospital en route to Tennessee.


They nurse took 26 tubes of blood and the doctor looked us right in the eye like he was talking about dinner plans or Snookie and told us Calvin's condition is "escalating". His disease is "progressing". The options that once seemed like a miracle are now losing steam. Treatment options are more limited.

Then the cannonball: He'd like to have Calvin typed for a potential bone marrow transplant.

Do you know much about bone marrow transplants? I didn't use to, so I started reading up. And now I wish I hadn't. It's scary business. Like, cry-in-the-dark scary.

But what's even scarier is that the docs are already pessimistic about finding a donor for Calvin, due to the fact that he has no known biological siblings and he's Asian.

Today I left the house today at 9 a.m. not to return until 9 p.m. (just like I did Friday and will do again tomorrow, though this is beside the point).


I have no photos to commemorate the day, but I'm happy to paint a word picture of yours truly: flat hair, greasy chin, sweaty pits, ho-hum attire, sunglasses.


What can I say? 36 isn't looking too hot from here.


It's my birthday, and it wasn't one for the record books, if I'm being honest.


There were silver linings to be found, like extra time with dear friends, Mediterranean pepper salad, buzz-cuts for all the boys. Some of those who love me best wished me unending happiness and salsa, and I'm happy to report that yes, there was salsa today. Praise God for salsa and I'm not even playing.

What may have tipped the scales from "good birthday" to "what birthday?" is the fact that I spent three hours at the doctor with Mr. Lee. We will go every day for the next five days while they take a closer look at what his bone marrow is doing, how its behaving.

I have a really hard time squaring a sweaty boy who spent his morning at soccer camp with the one who is told hours later that almost all of his neutrophils have come up missing.

I much prefer living in la-la land where I give him medicine twice a day and watch for fevers. I freaking hate being reminded that my kid is sick.

Of course, he was a champ today. He didn't flinch for his blood draw, didn't wince for the shot. He spent the 45 minute drive home telling me in great detail that when he grows up, he plans to be a doctor in the National Guard/missionary. "And when we're all done on the battlefield for the day, I'll go out a build a well for all the soldiers and the poor people." He requested care packages of band-aids, "maybe a little gauze", "lots of jugs of water or other liquids that I can drink", "your special homemade spaghetti" (aka noodles with Prego sauce), batteries, books "for when I need to relax or during break time" and a knife, "if Daddy goes to Cabelas or something".

He's hoping to be stationed in North Korea, but India would suffice.

This child? He's already changing the world, at least from where I sit.

So if you have the urge to wish me a happy birthday, sign up for a kit instead.

We are praying it doesn't come to this, but we want options if it does.

Do it for me and for Krissy and Calvin and this little guy. It's so super easy. It would be the best birthday gift this old girl could hope for.

Officially Pushing Forty,
FPFG

PS - For those of you who know us live and in the flesh, we are doing our best to not focus on all of these "what ifs" with Calvin. He's loosely aware of the possibility, but he's mostly blissfully ignorant, and we'd like it to stay that way for a while. We beg for your prayers and will keep you updated!

65 comments:

  1. All day I was hoping for a post from you!
    True story!

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  2. He WILL build wells for poor people someday Shan! I just know it. Happy 36th Birthday. I just had mine 4 days ago. 36 isn't looking very good here in my house, on you though, it looks marvelous. You are a stunner.

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  3. 36 looks awesome on you. happy birthday sweet friend. you are changing the world.

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  4. more than happiness but a deep abiding peace...

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  5. I'm sorry your boy is on this journey... it sucks to have a sick kid.

    My BF had a bone marrow transplant to combat lymphoma in 2001. She was 39. She has been cancer free ever since and last month graduated from Law School. I'm not going to lie - it was not a walk in the park by any means. But she did it and it sure paid off!

    My (now 21) son had a heart transplant at 17. When he was 15 he and his twin got the flu. Joshua got better and Jacob did not. The virus spread to his heart and caused complete heart and multiple organ failure. When he crashed, he stroked. My healthy, rambunctious and sometimes obnoxious 15 year old boy was left disabled and in need of a heart. 18 months later he received the gift of life. He still has a long road ahead of him, but the point is, now he has a road!

    I know your sweet, adorable, vivacious and probably sometimes rambunctious boy also has a road... it is not a smooth one and I know how horrible the bumps can be - but it's a road.....Praying for all of you as you travel it.

    gena

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  6. Oh, Calvin is such a brave boy! So sorry for the scary news.

    Happy Birthday to you - mine is Friday. They do get less exciting - well, except for the food of course.

    I am already on the registry. I have been on it since I was 17 when my best friend needed a bone marrow transplant. I've never been a match unfortunately but I hope that one day I will.

    You can put a badge on your blog about the registry - I have one through Be the Match. :)

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  7. what a sweet boy! we share a love of north korea calvin! I just signed up for the bone marrow donor kit and am so excited to help. blessings to your sweet family as you navigate health issues. no fun at all :(

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  8. Praying that little Calvin's disease doesn't progress and he won't need a transplant. I work in the field.... and know how scary BMT can be for families. Thanks for encouraging others to sign up to give hope to the THOUSANDS of patients searching right now for their perfect match. And thanks for signing up.

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  9. PS- If your readers need a "promo code", you can use hope4all. It's an active promo code... will waive the fee but encourage a donation.

    Conversely, the link is http://join.marrow.org/hope4all

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  10. Happy birthday dear one. Yes, 36 years ago you made your Dad famous and your Mama too. Sometimes I find myself awake at night trying to wrap my mind around the facts about our Mr. Lee. It is so hard to believe that he can be so healthy looking on the outside, while his body is fighting itself on the inside and causing such serious problems. But God is holding him in the palm of His hand just like He does the "whole world" with him. And God knows who the special person is who will be the perfect match when the time comes. Nothing is hidden from Him. And we are learning to trust God more because of our little Cal. Someday he will do exactly what he is dreaming of now. I can see him helping to make his native country whole again. No more North and South, but simply Korea, with plenty of fresh wells for everyone. You are such an amazing Mama, I am so proud of you!!

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  11. dearest fpfg,

    your posts on calvin always tuck at my heart strings, and i wish i could give the kid a huge hug. and you as well! i'm korean, and years ago in high school, our church was doing a blood marrow drive, and i've been on the list. there's hope that there are other asians/koreans out there, so i hope this gives you hope today. calvin's changing the world even through your blog!

    sending love from sunny las vegas,
    grace

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  12. Alright, my kit is on the way. Should be here in about two weeks it said. I've got a lump in my throat reading about your sweet boy. I'll be praying for him and for you. And Happy Birthday to you!!! Don't you worry about pushing 40 - I've already pushed right through. They are good years - the new 30 so I hear.

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  13. My, oh my...I am so in awe of your boy, his dreams and his heart! I just sent for kits for our family.
    Happy Birthday Mama...praying your family through.

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  14. Praying for your precious boy, Calvin, and for your Mama heart.

    And I agree with Melissa, you are changing the world.

    Hugs to you tonight.

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  15. Happy Birthday! Another kit is on it's way. Such stinky crud to be thinking about. Calvin sounds incredible. And such a trooper also. My kids (and probably myself) would be whining and crying through it all. My youngest was a real handful getting kindergarten shots...and he still needs one more that he doesn't know about yet. That should be fun.

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  16. Dearest Farmgirl/Rentalgirl/Birthdaygirl, prayers for Calvin's dreams to come true, have been whispered, and sent. Your Birthday Wish will be in my mailbox in two weeks.
    ~G~xo

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  17. I am already on the registry list but will do my best to spread the word about the need for a larger Asian/minority donor base. Prayers are with you and Calvin (and the rest of your fam too).

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  18. HAPPY BIRTHDAY Sissay! I'd so sign up for a kit, if only they'd send it to Africa ?!
    Little C's "National Guard/Missionary/ Dr.in North Korea" of course has tears leaking out of my eyes and on to my sweaty shirt. I'm so darn proud of him and frustrated that I'm not there to be apart of (this time)in each one of your lives. Sometimes it seems so unfair that God has called me to live here and not there with all my dearest loved ones. Then I remember, LIFE ISN'T FAIR and Calvin is living proof. However, as Mama always reminds us. "God KNOWS and His Ways are Higher than Our Own." And we must all DO OUR PART. We only have One Life to live, and One chance to be used by Jesus to CHANGE THE WORLD.. just like you are doing with your bone marrow birthday wish, moving to the slums of Goshen, giving up your 'me time' for someone less fortunate, the list goes on.
    It is times like this that I realize we're not here for Each other (you and me), we are here for JESUS and Nothing else matters. You are my inspiration today to continue being a missionary in the depths of developing lands and not run home to the Midwest just to be closer to you. We have bigger battles in this world and if you are making such an impact in your 'backyard' I too must continue despite the trials and tribulations.
    I LOVE and MISS you more than ever, but I know we are both where we meant to be... Living our lives for HIM and not ourselves, even if I miss you like mad :)
    HAPPY 36!! I'm not too far behind ya ;) or so it feels...

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  19. oh, praying for your sweet boy (and your momma's heart). This momma knows the feeling all too well. Calvin - we are praying for you - that those little neutrophils will buck up and do their job! and let me say - as a momma of 4 who cry at the thought of needles - I am so proud of you!!!! Shannon - our kits will be here in 2 weeks. Wish we lived closer - I would bring you some salsa - maybe next time we are in Goshen?!!!

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  20. Happy birthday, Shannan. Calvin is so brave! And I know one day we'll be reading about all the things he's doing for the kingdom. Thank you for this informative post. I had no idea that it only takes a swab to be on the registry. I saw on a news show the other day that they have new technology with bone marrow transplants so they are not as painful as they used to be.
    You're a beautiful soul. Calvin is blessed to call you "mom". And I know you're blessed to call him "son".

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  21. I will do this. I will click the link and register. This is important and so are you. You make us see.

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  22. This breaks my heart for you and your little boy. I'll be praying for a miracle.

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  23. happy happy birthday, sweet girl.
    you and your calvin are the absolute bravest. we've got prayers and salsa with your name on it here in ohio.

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  24. Praying for you and Calvin. we exchanged emails a few months back about our boys sharing similar conditions. Hang in there and know that I'm thinking about you and your big, brave boy.

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  25. Oh girl. You've got my prayers. Lots of 'em.

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  26. Hi, just came across your blog, and this broke my heart. I'm ashamed to say I've never even heard of the bone marrow registry, and went right away to sign up, but I have chronic back pain that I see a chiropractor for every 1-2 weeks, and that is listed on the medical conditions list, but I really wanted to join. I will be following your blog, and will try to share with everyone I know the importance of getting on the list if possible.

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  27. This makes my heart hurt. Let's not talk about it right this minute.

    I'm sending this link to my Anna. She's Korean, you know. Cross your fingers in case.


    xxoo

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  28. I'm on the list! I did the bone marrow thing years ago. I get an update every now and then - is there anything I should do to make sure it's still current? It's been years since I got any info on it. I volunteered when I was still a teen or early 20's so it's been a LOOOOONG time ago!

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  29. praying for a beautiful mom and a beautiful son. we, too, are in the trenches with health issues over here. it breaks a mother's heart. i will be lifting you and calvin up to our Healer.

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  30. I can't imagine that mine would be of any help to anyone but I'll sign up. Couuld you make a plea towards older adoptees from the same country to be tested. Just wondering. He looks so healthy but I remember from before that this has been ongoing. He is such a smart caring little guy. Seriously beyound his years. Good luck.

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  31. Happy birthday Shannan! Heading over right now to order a kit in the name of that cutie patootie Mr. Lee :)

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  32. I'm going to look into the UK version of the register.

    What a boy! So much courage in your family. But I also know that any question mark over one's kids well being bypasses every superficial emotion and tears right into the heart. So very much love and prayers to you, over the ocean. Bxx

    ps best birthday wishes to you oh young one!

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  33. Your son has such a huge heart and has touched mine.
    I just signed up for the kit.

    Happy birthday girl - enjoy it! You deserve it!

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  34. Praying for your little man.

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  35. Just signed up on the registry - - kit in 2 weeks! Praying for you guys.

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  36. we're on the registry because friends of ours had a baby that needed a transplant years ago - it does feel good. wishin' i could register my asian girl (5 year olds can't do it can they?) as i never thought about that need.

    sending lots and lots of prayers.

    xo ellie

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  37. Just wondering if you know about Butterfly needles? You probably do. But just in case you don't they are super fine needles and hurt less. They are more expensive so aren't always offered. My Amy asks every time. She also is fascinated with Philbotomists. It really helps to distract her.

    Also, I meant to comment about curtains. I have often used tablecloths. Hemmed already. Just clip and hang like your tea
    Towels but bigger. Target has some really cute green and white right now and William Sonoma has Provence that is sort of reasonable.
    Off to register. Have meant to for a long time.
    Pam

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  38. already registered & wondering whether my asian kids can be registered w/ my consent...

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  39. I'll be praying Shannen. I wish I could do more, but apparently you have to be a certain age to be a donor and I am too old. I don't usually mind being sixty-five. However, I felt terrible when I tried to sign up as a donor for a young man in our church who needed a transplant and was given the sad news. So I'll just pray all the harder.

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  40. So blessed and privileged to know you all live!! Please tell Calvin that he is my hero.....I knew the 26 vile story - but to see it, WHOA! I'll look at that registry and if I'm able - I'll do it! I hope that I can live long enough to see Calvin's dreams come to life. God bless and keep you all in His everlasting strong arms!

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  41. oh sweetie. i can't believe i'm a day late for your birthday. i think Calvin's words about who he wants to be when he grows up are probably you're most favorite present ever. i'm so sorry you and Mr. Lee have to go through this crummy stuff. my prayers to our gracious God are with you and your dears. i'm off to check into this registry. xoxo.

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  42. Just signed up for a kit - and requested information on blood cord donation as I am expecting. Prayers and Blessings to your family.

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  43. Thinking of you and your sweet Calvin. He sounds like an amazing little boy. And happy birthday to you - I hope you take a few minutes to celebrate yourself and all the inspiration you bring to others! xo

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  44. Hello sweet friend. I'm about to go to sleep tonight in a foreign land. I haven't checked a single blog in the last 9 days but for some reason tonight I was drawn to check on you. I'm stunned speechless and you know that doesn't happen to me often. Please hug that beautiful boy of yours from Emma and me. I love you and wish this had been a different kind of birthday for you. I hope the birthday wish I know you ate wishing comes true for you. I'm sending live and prayers your way.

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  45. i feel like such a pill for not knowing what Calvin's diagnosis is....have you shared it here and I didn't read it?

    praying for you and for him and for the drs that are working with him.

    i read your sister's comment to you and nearly fell apart....she spoke truth and love, and it was such comfort for me to read...can't imagine how encouraging it was to you.

    checking into the registry....keep us updated.

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  46. This is heart-jumping-into -my-throat news. I had no idea. Praying for you guys.

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  47. I clicked the link. Happy Birthday!

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  48. i wanna reach in through this screen and wrap my arms all around you! i knew calvin had some problems, i had no idea they could/were this serious. what is it exactly? i've had 2 of my 4 kids have cancer scares, there's nothing like thinking your babies are seriously ill.<3

    i will check out the link. i am probably dissqualified {they won't even let me donate blood} becuas eof my own health issues, but i will try!

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  49. i, too, had no idea of the seriousness of Calvin's condition! Praying for you as his momma and for your whole family as you strive to live life despite this illness.
    checking out the link...

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  50. Can't quit thinking about this since I read it last night. Sending you love from my tiny corner of the world. http://maemcconnell.blogspot.com/2012/06/sending-love-to-calvin-and-his-mama.html

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  51. I was just brought here by Two Hoots & a Holler. I am praying for your family, and I will be following along on your journey.

    "You have this faith and love because of your hope, and what you hope for is kept safe for you in heaven. You learned about this hope when you heard the message about the truth, the Good News" 1 Col 1:15 (NCV)

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  52. Oh, FPFG, thank you for sharing this, I know it can't be easy. But maybe we really can all help bear your burden in some way. Thank you for adding words like neutrophils, because I like to pray specific prayers. And I'm praying them for Calvin and his sweet family.

    Happy, happy, happy birthday. And anyone who's at the Dr.'s office with their little on their birthday automatically gets the whole month to celebrate. So enjoy! Thanks for sharing your life here. I'd really miss it if you didn't.

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  53. I'm sort of a new reader (since you guest posted at TLC), and I had not read back far enough to know how sick your little boy is. I'm so sorry. I had read of medical bills but didn't realize this is chronic and very serious. :( You are a good example of keeping your spirits up and being vulnerable at the same time.

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  54. Praying, friend!
    I have a blasted blood disorder, so can't fulfill your birthday wish. But I am...
    Trusting God will provide
    Believing God will grant Mr. Lee's heart's desires
    Hoping THE PEACE that surpasses understanding is ruling your heart
    Thanking God for holding YOU ALL (needle pokers & White coat-ers, too) in His MIGHTY right hand
    Praising that we already have victory

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  55. Oh wow I am definitely praying for Calvin!!!

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  56. Praying for little Calvin and his Momma. My husband received a good report on his metastastic lung cancer today and our grandaughter is scheduled for her kidney transplant in 23 days, God is Good and answers prayers, Shannen. Calvin will see his dreams of helping Koreans, keep your head up, Dear.

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  57. I am a friend of Keisha's, and want to send your family and Calvin reiki. I remember Keisha anxiously awaiting your call when you brought Calvin home. My prayers are with you and your family.

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  58. I'm so sorry about Calvin. Brad is already ON Be The Match and has been for a few years. I forget anything that's not on my to-do list, but will add it. I've always been surprised he hasn't been matched up with anyone yet.

    On the positive: He's a nurse at the Univ of Minnesota and works on the transplant unit. He sees miracles happen there EVERY day! He's witness to people's lives changing regularly and gets updates and sweet letters.

    I'm saying prayers for Calvin and for his mamma. I wish I lived closer. I'd just show up at your house with salsa. Dislike of drop-ins be damned! (That's actually me- I'm not a fan of drop ins, but to be fair, it's usually the one same NOSY neighbor!)

    Sending you love, virtual salsa & gingham fabrics in an array of colors~

    xoxo~

    TT

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  59. I didn't know about the registry before. Thank you for your birthday wish! I signed up for a kit and said a prayer for Calvin.

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  60. After going to the link provided, I found out that I have several medical conditions that would keep me from donating. I'm sorry. I tried!

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  61. Hi Shannan,I've passed 36 and 50 is coming up quickly..Happy B'day to you..Calvin is the BOMB!! Brave,funny,loyal and a fighter..I had the same dilemma 22 years ago.Lymphoma was my foe.I'm adopted,no none siblings,several bone marrow collections etc etc..I'm still here kicking,raising 2 teenage boys who get so thick under your skin, you could swallow them up and love them all over again.I'm taking a leaf from Calvins book,Looking towards the future and not flinching at the now..Your son is a little inspiration..xx

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  62. Your boy?? He is precious. And indeed a world changer. Love that heart of his and all the wisdom-beyond-his-years he shares.

    And you? I'm praying like wild for you and your boy. And I'm clicking on that link right this very second. All this hits a bit close to home because of my own little Korean. I pray that there is one found and willing and able if it comes to that for Mr. Lee.

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  63. I want to encourage you that God already has your precious boy's bone marrow donor chosen & He will work it out! When Rob needed a kidney transplant, God told me with an AUDIBLE voice (I feel as special as Moses & Abraham) that I was the donor. A year later, I was finally contacted to be tested & 7 months after testing began, the transplant occurred. Rob, being adopted, was a patient who they said would have a difficult time finding a donor. God placed me, an unrelated Pittsburgh native, into our small town, & 16 years after moving to this small town, God used the body He created for me to save another's life. I was a "sibling" match, which is the closest match someone can be to another.

    So know that God will provide that donor. He is the ultimate physician, & while you are waiting for Him to work it out, He will be teaching you & your family special lessons.

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  64. Definitely praying for you all.

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