Harry's Illness {Part 1}

Wednesday, January 11, 2012

harry CALbaby

{One of my favorite baby pictures of Harry.  He was about 5 months old and had just learned to sit up.  He was in the process of laughing and falling when she shot this.  The Cafe au lait spot is visible there on his back.}


So I have alluded to some serious health issues with Harry. I have asked for your prayers (thank you for them). The other day, Harry gave me permission to share here what has been going on.  Last summer, he underwent a ton of testing for stomach issues/food allergies.  Ironically, a gastroenterologist noticed a large cafe au lait spot on Harry's back (you can see the spot in the photo above and another too).  He asked us if Harry has any more and I quickly said no. I really did not think he had any more. Doctors have always noticed that birth mark and always asked and I always thought that was the only one.

 But over the next few days, I noticed that he DID have a few more.  And I had this gut feeling that we should ask more about it. I swear the Holy Spirit would not let it go.  I just knew that I needed to ask the doctor why he asked about the spots. So, when Harry had some procedures with the gastroenterologist, I had Dave ask him about the spots (I did not want to seem like the crazy worried Mama).  The gastroenterologist said, "well as long as he doesn't have any in his armpit or groin, it is not a big deal."  I quickly said that Harry did not have any in those areas but Harry lifted his left arm and sure enough there were some in his left armpit. We had no clue. After Harry's procedure, the doctor came out and told Dave and I that we needed to see a neurologist to rule out a genetic disease called Neurofibromatosis 1.  We were stunned.  We were completely overwhelmed and terrified.

Neurofibromatosis is a genetic mutation.  In Harry's case it would have been a spontaneous mutation that occurred while I was pregnant since Dave and I do not have it.  There is no cure.  There is no treatment.  People with NF-1 typically get tumors called neurofibromas.  They develop on the nerves.  Some can be cancerous (10%).  They can be very painful.  They can be very disfiguring.  They cannot always be removed.  And if they are, they often return.  This disease can be mild or it can be really, really awful. Actress Gillian Anderson's brother, Aaron died from an NF tumor this summer.  He was 30 years old.  Children with NF1 are 200-500 times more likely to get leukemia.  There is no natural pre-determined course for this disease.  Every single case looks different.  There are a plethora of health issues that go along with this disease...too many to name.

When I found all of this out, my heart completely shattered.  The thought of my sweet, little freckly, funny Habu having this disease about did me in.  I was so sad for weeks.  I would look at him and wonder what his future would be.  I would look at him and wonder how many more pain free, tumor free days he would have as often puberty is when the tumors really develop.  I went through all the stages of grief.  And I prayed, a lot.

Then I realized that God already knew whether Harry had this disease.  No amount of worrying or crying would change that.  I suddenly felt more peaceful.  Let me say that I did wallow in doubt, fear and pity for a few good long weeks. I have never doubted that God has given Harry some really amazing gifts.  In fact, a woman sought me out at Mass last Sunday to tell me what incredible work Harry is doing on an anti-bullying committee at school.  She went on to tell me how articulate Harry is and what a good leader he is and how good his ideas are.  She looked right at Harry and told him he was special. This is the founder of an anti-bullying organization that met Harry at a meeting at his school.  Anyway, I am digressing but I KNOW that God has big plans for Harry. For a while though, I wondered if this disease would change him.  I worried it would defeat his spirit.  But now I know that whether Harry has this awful disease or not, God will still have big plans for him.  In fact, maybe this disease is part of the plan (although I really hope it is not).

To be continued....

I apologize for breaking this up into parts but it was emotionally exhausting to write it all and I need to do it in pieces.

Please pray for Miss Libbie.  She had surgery today.  I got to be there this morning before they took her back she was so cute and loopy from the meds.  That Libbie is a trooper. I am going back up to visit Shelly and Libbie for dinner tonight.  Love those girls!

Also, Cami is having surgery this Friday. I so wish I could be there to help them. They could use prayer as well.  It is going to be a long haul for them.

Finally, thank you for all the kind comments on my 5 year blog anniversary.  I loved reading every one.  And I plan to make the rounds visiting all of you who have blogs over the next few weeks.  I really appreciate you taking the time to say hello.


  1. What a scary experience! Thank you for sharing and I look forward to part 2. Keeping you and your family in my thoughts and prayers!

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  3. Kim,
    I wish I was there to give you and Harry a big hug!! Is there any thing worse in the whole world than worrying about your child? I can't imagine what you are all going through but I will pray for all of you. xoSissy

  4. How scary! Sending hugs and prayers your way.

  5. Hi, I am Katie in St. Louis. I have commented a few times in the past. harry is most definitely in my prayers. I admire your attitude. I imagine the journey has not been easy. My heart goes out to your family. Thanks for sharing. Your outlook is inspiring!

  6. Kim,

    I am a follower of your blog but very infrequently post comments. I have my own, very neglected blog. :)

    First, let me say that I will be praying for Harry and your family. I also wanted to thank you for sharing this very difficult and frightening journey you are on. My son Sloan has several cafe au lait spots and I will now have him evaluated. I am somewhat concerned from what I have just read because he also has learning disabilities. LDs apparently often coincide with the NF diagnosis. Had I not read your post, I would not know to have him seen about this.

    We live in Dallas, Texas and if you, by chance, know any specialists in Texas, I would greatly appreciate the recommendations. I pray that you will definitively know soon that your sweet Harry is healthy!


  7. Oh my goodness....I can't imagine.
    Praying for you and Habu. Anxiously awaiting part 2!

  8. Oh, Kim!
    Harry is just precious, and God DOES indeed have great plans for him!
    Way to go, Harry for being such a great leader, and for being a part of anti-bullying (such an important role to play right now!).
    Sending prayers your way.

  9. Kim this is the first I am reading about this and I just want to send you a great big reassuring hug. You dont' need me to tell you the power of God and what he can do. I am sure like you said he has a special plan for Harry and theres even a reason why you found out now and not a while ago. He seems and looks to be a healthy, well adjusted active boy. I bet God intends to keep him that way and he will be one of the mild cases. In any case you can bet I will keeping him (and your family) in my prayers. You are "good people" and I believe God takes care of people like you in a special way. Wishing only the best for Harry!!

  10. I'll keep Harry in my prayers. He seems like such a strong boy and whatever comes to him he will handle it better than you'll ever be able to know.

    Please keep us updated and know we are all here for your family.


  11. Kim, I am on the edge of my seat and on my knees in prayer for your sweet Harry! My best friend's little girl has NF-1 and I know would be happy to talk to you if you need to talk to anybody. But, I am praying that your next post says that Harry does not have it.

    So brave of Harry to share his life with your blog friends so that we can pray specifically for him and support him (and you). What an amazing young man he is and will continue to be!! I can feel your pride radiating from your post!

    Bug hugs and loads of prayers!

  12. Oh my gosh. I have no idea how I would be able to handle that! I admire your strength and I am praying for Harry!

  13. Kim, congratulations on 5 years. I remember following your blog shortly after Kate came home. You are loved and we are blessed. And, speaking of blessing...

    Harry is blessing so many with allowing you to share.

    My dad had NF1, but back then it was called Von Recklinghausen's. He had cafe au lait spots all over. He did not develop leukemia thankfully nor did he have any of the tumors. He had all the freckling and some of the small bumps but none of the large tumors. None of the 3 of us children inherited it. We had genetic testing for it when he passed away in 1977 from unrelated lung and liver cancer [he was a heavy smoker and the lung cancer spread to his liver. He was 3 days shy of 46]. Now I wonder if that is why my dad had GI issues. I probably inherited some of the many food allergies I have. We didn't know much about it back then and after hearing we didn't have it, I never thought much of it. Harry is indeed, a very brave and very old soul.

    Your prayer warrior Harry is COVERED in prayer. What a privilege to pray for him and your family as you navigate this divine interruption [thinking of my recent Bible study of Jonah by Priscilla Shirer :-)].

    PS @Tisha, I live in the Dallas area. If you saw the Ch 8 story the other night about the Medical City nurse practitioner assisting a family to get doctors at Medical City to save their child with cranial facial issues, she is a close friend of mine. Jen knows a lot of medical professionals in the Dallas area. I would be happy to ask her anything for you. Please email me at firecrackermommy@gmail.com if that is something of interest to you. <3

  14. I've been praying for your little man for a while now. Although I obviously cannot completely understand what you are facing, I do have some insight into how it feels to have a child with a incurable disease (one that could potentially be fatal). I'll be continuing to pray that God's grace fills your hearts and minds as you continue down this road.

  15. Oh, Kim. I know how hard this has been on your mama's heart. Heck, I can't even imagine how much wallowing I would have been doing. You are right, though, God knew all along.

    Praying for good news in Part II!! And for sweet Libbue and Cami! I was just over there "visiting" and wishing I could fly to So Cal too!!

  16. oh Kim...that feeling of the unknown and what if's...praying for sweet Harry, and I am anxiously waiting for part 2...xoxo

  17. My heart goes out to you. There's no ache quite like what you feel when you're worried for your child. Harry certainly is a very special young man and yes, God must have some great plans for him. Hugs and Prayers for Harry and for you.

    Gin =)

  18. Kim and Harry, thank you so much for sharing this. Our prayers are with you as you continue to learn more about what this means for your life. Harry, I know God has Big Plans for you. Never doubt that. Sometimes I wonder why God has made my 2 girls' life stories so very unique (and challenging), but then I remember that He has plans for them bigger even than my own.

  19. I will keep Harry in my daily prayers. I can only imagine how worried you are. It is always hard when any of our children are ill. Stay close to God and he will give you strength.

  20. harry is such a brave young man.
    i think he's awesome
    as are you

    love you friend of mine

  21. Oh my -- your sweet amazing Harry! Am so sure that God does have big plans for him and Harry is already doing so much good work! Keeping you all in my prayers.


  22. Thanks for sharing with us. You are a true testament of faith in troubled times. Continuing to think of and pray for your family, esp. Harry.

  23. Harry we are praying for you right now! YOU are fearfully and wonderfully made and HEALING is the childrens bread! It BELONGS to you sweet boy. It is part of your inheritance. I am praying for you right now with babies in my arms and KNOW that God has such tremendous plans for you!! He has blessed you with amazing gifts and talents for His purpose and you will fulfill every part of that!
    We are sending you our love and cheers and support and prayers and encouragement!

    Kim, thank goodness Harry has such a wonderful Mother and Father in the two of you! I know you are doing everything you can do in the natural and in the spiritual to walk through this! I am sure your heart has been so heavy you could barely manage most days....
    Our family will be praying for yours in the days and weeks to come! I know a breakthrough is coming...
    I would also bet that your sweet Harry has a calling into ministry....
    And that the "special" things people see and often talk about is the anointing! God has His hand on him....

    Love and Miracles,


  24. Sweet Kim, your gorgeous Habu is covered in prayer! (that baby picture is so stinkin' cute!!!!). Praying for good news!! xo ellie

  25. Kim,

    Thank you for sharing about such a difficult, scary experience. I really enjoy hearing all your stories about Harry (his devotion to God, his love of photography, the special bond he has with Kate). . . and every single picture you post of him has that bright, amazing twinkle in his eyes! He's obviously a very special little boy.

    I pray that the road ahead for Harry as far as his health goes is a smooth one. I know from personal experience how physically (and mentally) tough it can be to live with a chronic medical condition - where you never know if/when it may cause problems.

    Harry (and your family) will be in my prayers. I look forward to hearing "part 2" and knowing how he's doing going forward. Wishing him all the best from Minnesota. :)


  26. Kim, Harry, and family - I'm sending prayers your way. What a scary thing to go through. Praying for you.

  27. Kim, I'm a regular reader in GoogleReader, but I had to come over and comment today. Your sweet boy and your entire family are coverd in prayer. God's plan is perfect, and I am thankful that you're sharing Harry's story here so that others might learn. He's absolutey special, and such a gift.

  28. God has yet again showed up and sent out His vessels.As I mention in the "1000th anniversary" post" about the vessels and the ripples it creates, is proof yet again in this post. Harry is THAT vessel. Harry's story would not have been told had God not laid it upon Harry's heart to allow you to tell his story. Harry's (The mighthy vessel) is placed upon the unsteady and unknowing "waters" of life. Harry's placement on these water has begun a ripple. Tisha (ripple-1) would have NOT known have her son Sloan evaluated because of the same similiarities as Harry's. Hence,the ripple continues to widen.. Tisha's story then caught the attention of (Beth ripple-2). Beth then tells of a close friend and physician (Jen-ripple3)who knows wonderful physicians in the medical community. The ripple has expanded and touched, helped and blessed many who may not have known where to turn. Kim, your beloved Harry is in God's favor. He knows that child from every hair on his head to the soles of his feet.

    Harry's life is written and authored by God. He know's every Chapter. This condition does not define who he is.

    You and your family are continually in my thoughts and prayers. I can't wait to see what God has planned for this young man.

    Jeremiah 29:11 For I know the plans I have for you, declared the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

  29. Prayers Harry and the rest of your family. Worrying and wondering about your childs health is incredibly stressful.

    Harry seems like a great kid. I'm sure my boys would get along well with him.

  30. Oh Kim... I am so sorry you all must endure this. It is awful to even think of such a happy, exuberant boy having to deal with such frightening things. I will pray for Harry. I have such a great deal of affection for all of your children, as I have followed their daily lives for so long now. I ache for you.

  31. Hi Kim,

    You had wanted to "meet" more of your followers so I 'm introducing myself. I'm Jenny and I have been following your blog for a few years since we were paper chasing our little guy from Southern China and I still love to follow adoption blogs. Our story is on www.myadoptionwebsite.com/ourethan/.
    I found your blog on Sara's (Football and Fried Rice) blog list. We live in the same metro area. I also wanted to tell you I was praying for Harry. Your outlook and faith inspire.I also appreciate your honesty and doubts. we all have them! Thanks for sharing your blog!

  32. Haven't stopped by in quite a bit, but just want you to know that I have you in my prayers:)

    Blessings, Ashley

  33. Sending prayers your way...hug that sweet boy of yours for all of us out here:)


  34. we are dealing with this with our daughter Rachel, she has been home from China since July 2010. It was a complete shock to us. They believe it is NF1, but because she is young only time will tell. Would love to connect more about this...

  35. Oh Kim! Harry is in my prayers and will continue to be! And also Libbie and Cami!

  36. so he has only one spot on his back or he has more spots on his body? May God doesn't harm harry

  37. may lord give him happiness in his life. do he has only a mark on his back or more on his body?


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