Harry's illness {Part 2}

Thursday, January 12, 2012
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{I just love the way Harry looks in this snapshot taken on Christmas Eve}

I have been living with this mostly under my hat for about 6 months. I did not want to talk to my friends locally about it too much for various reasons. Harry did not want to know much about the disease either.  He knows he might have a disease and that these funny freckles/birthmarks are a sign of it but he did not want to know anymore than that.  I was okay with that.

So, we did a brain MRI this summer looking for an optic glioma.  It was clear.  Thank the Lord. Thank you all who prayed.  Then we waited to get in with some specialists.  See, Harry is on the edge of a clinical diagnosis.  He has 5 cafe au lait spots (CALS)  that meet the criteria of NF1 and axillary (armpit) freckling.  The diagnostic criteria is 6 CALS and armpit freckling or other things (2 of any of them).  He is frighteningly close (one cafe au lait spot away basically and we just might not have seen them all yet as some are hard to see without a special light).

Monday, we had an appointment with an ophthalmologist who specializes in NF.  He was looking for Lisch nodules which are kind of like freckles on the eye.  Harry did not have any Lisch nodules which is GREAT news.  The doctor told us that over 90% of kids with NF would have them by this age. Although the published literature claims 50% by his age so I am navigating all this information. Kate has been praying, "Dear God, please let them not find any freckles on Habu's eyes."  God heard her sweet little prayers.

We are not out of the woods yet.  See, there really are only two explanations for Harry's CAL spots and axillary freckling (migraines are a soft sign of NF too) and the other mutation is very, very rare.  It is very likely that Harry has NF1 because of these two hard signs and the migraines and other soft signs.  Hopefully, he has a mild case.  I am not sure when we will now for sure.

So, next Thursday (1/19) Harry will be poked and prodded once more by a geneticist and some NF specialists.  We will not have results for a long time.  The NF gene is HUGE and apparently it is a challenge to find mutations.  And this test is tricky.  Harry's case is somewhat rare in that mostly one side of his body seems to be affected thus far and so the mutation might not be in all the cells, so genetic testing might not be the most accurate for him.  If he has a "segmented or mosaic" form of the disease it is more difficult to find in the genetic testing.  In other words, we might not have answers for a very, very long time.  I have "met" a few people on the NF site who had all negative test results but do in fact have NF and did develop the tumors as young adults. There are a number of people out there like that. So, many people just play a waiting game which is so not easy for a control freak, planner type person like me.

I am posting this because I realized that there is a chance it could help someone else going through something like this. Already I have seen some connections and felt huge support from the first post and I am so grateful for that.  I also joined a neurofibromatosis site last summer and I cannot even tell you how much some of the people on that site have helped us navigate these muddy waters.  We learn so much from one another's stories and experiences.  And not to sound disrespectful-- but the other Moms on that site (not me) know more than some of the doctors we have seen.  They have read every single ounce of research there is and they live with this disease.

Also, we certainly could still use some prayers.  Although we got great news on Monday about his eyes not being effected thus far, Harry had a very hard day.  He cried a lot.  He woke up at 3am from a nightmare. The appointment was tough and he is emotional about all this.  And he is scared.  I think the gravity of it all finally hit him.

I would ask that you specifically pray for Harry.  He is terrified of needles and that poor boy has been stuck more in the last 6 months and we are not done yet. Please pray for healing and peace and clear answers.   We also need the wisdom and discernment of the doctors.  That would be great too. Thank you.

I do want to share one good thing that has already come from this (aside from all the prayer and support).  A year or so ago, Harry and I were struggling.  I even posted about it.  We were in a bit of a rough patch in our relationship.  I am not sure how we got in that rough patch in the first place but we have been so much better for a long time.  But these last few months, we are even closer.  He shares things with me and is vulnerable in a way he has not been for a very long time. He is more affectionate with me too.  It is like he knows I have his back.  He knows I am fighting for him.  Maybe it is none of that and just a phase.  Whatever it is, I am so grateful for how close we are right now.

53 comments:

  1. And we've got your back Kim. God bless you all, especially Harry & you. Will also pray for the things you've asked.
    Norma

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  2. Oh Kim- thank you so much for sharing! The not knowing and waiting seems like the most difficult part of this whole ordeal. I'll be keeping Harry in my thoughts!

    KK

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  3. Kim,
    Have you used an emla gel? (not sure what theyre called in the US, goes by Angel Gel over here) is a topical local anasthetic so Harry will not feel those needles as much.

    Yve

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  4. Kim in reading this I so wish I could reach through my screen and give Harry the biggest hug. I am so sorry he is sad and having a hard time with this (naturally as any kid would). He is so blessed however to have the amazing family he does, seriously you are an "A-1" family and my hunch tells me he is going to pull through this beautifully. So far, it seems the news has been as good as it can be, and that is something to be very happy about. I know you are not out of the woods yet and I will most certainly keep him in my prayers. Until the sun comes out again for you.....my umbrella is big enough for two :)

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  5. Prayers being sent your way and for Harry.

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  6. Praying for you and your family sweet friend.

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  7. Praying for you all, most especially Harry. I have the utmost confidence that Harry will put a positive spin on the matter and ultimately work in God's favor to bring many blessings from a rough journey!

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  8. Please know that little Harry is in my prayers! The LORD will use this for the good! also, I always ask for a numbing shot before they stick me with big needles. hurts like a bee sting but way easier that a big needle.

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  9. so sweet about ya'll relationship right now...gosh, i love that part.
    praying that the tests continue to come back negative.
    love you friend
    xoxo

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  10. will be praying for your sweet Harry! Sorry that you are all having to go thru this.

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  11. Thank you for your transparency. I am sure this has been a difficult road. Praying for Sweet Harry, that God would remove the fear and draw him closer to his family and Himself!

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  12. Praying Kim!! (You also could use Emala (don't know how to spell that either) cream- it's a numbing cream labor and delivery nurses use for their patients. I'm also TERRIFIED of needles, so the nurses always use this- and I take valum- in order to have procedures done with minimal panic attacks. Hope that might help sweet Harry out a bit. You are such a strong Momma and God knew that YOU could take care of Harry best!! Hang in there!

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  13. I can't imagine how hard and scary this has been for all of you. Your entire family, especially Harry, have my prayers.

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  14. His sparkly little eyes and freckled cheeks light up a room..I pray that the Lord can calm Harry's nerves, this is alot for a little guy! praying for you to be his rock and fighter and that God continues to give you the strength you need in this battle!

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  15. Thinking of your whole family and praying for Harry.....He is such a sweet young man...sending you a big hug too Kim. As a Mama this has got to be so hard to watch your child go through and then still not having all the answers. Hang in there!!

    Janice

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  16. So sad for the uncertainty that you're all facing with the diagnosis, but so happy that you and Harry are extra close right now. I'm sure he feels extremely relieved and safe to know that you're right there with him, on a mission to figure this out and make the best of it.
    I will definitely keep sweet Harry in my prayers.

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  17. Hi Kim,

    I will say many prayers. I am very familiar with NF. My dear friend has twin boys, now 12 years old, with NF 1. I remember when they first suspected it, they had to wait for about a full year before the diagnosis while the doctors watched for symptoms. I am happy to tell you that they continue to do very well!!! My friend found a lot of support through the local chapter of the Children's Tumor Foundation, and the organization even helped her organize an educational event at her their school. I actually ran a marathon in their honor last spring to support the NF Endurance Team. I will continue to say prayers for Harry!

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  18. Kim, I'm keeping you all in my thoughts and prayers.

    Susie

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  19. i am praying for you all kim...god bless harry and your precious family, hold you in his arms through all of this.

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  20. This is flooding me with memories of when my now 17 year old was 4. We walked the exact same road.
    He had more than 5 cafe au lait spots. We went for an eye exam and the doctor told us he did not like what he saw. Our son had elevated optic nerves. We were told they were 90% sure he had optic gliomas. I cried forever. The MRI revealed no optic gliomas. We were in the same boat as you looking for more symptoms. Well now many years later he has never been diagnosed with it.
    He is still followed for his unusual optic nerves and he does have drusen, a calcification on the retina.

    I totally understand what you are going through. Harry even reminds me of my CJ at that age.

    You will be in my prayers. Please let him know many people are praying for him!

    Blessings,
    Jennifer

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  21. Kim, I have a good friend who might be a good resource for you, her name is Shannon I will have her contact you if thats ok. Also I will be praying , Kathy

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  22. God bless sweet Harry! Sending thoughts and prayers and love and comfort and peace and grace your way.

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  23. I have added sweet Harry to my prayer journal...and you too..waiting is the hardest ....much love!

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  24. It has been too too long. I was missing so many of you from the blogs and wanted to see if you were "still here". I am so saddened to see this news about Harry.
    You are such a strong amazing woman and so supportive and full of love. I will never forget you being "there" when my life was falling apart.

    You all look wonderful. SERIOUSLY you do.
    I will pray for Harry and for all of you to have patience, love and strength in each other.

    I will be thinking of you all on Thursday and checking back for updates.

    Love, Anne

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  25. Thinking of you - I came by to see how you all were doing. So saddened to see this news about Harry. I WILL keep you in my prayers and thoughts and keep coming back to check in. Please keep sharing how you are doing.

    So many people want to love and support you. Just as you have for them. x Anne (H&H)

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  26. Continuing to pray for you and sweet Harry!

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  27. Praying for you all Kim....Best wishes

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  28. Catching up on blog reading. Adding your precious boy to my list this morning as I pray. May our Lord give you peace and strength as you walk this road. Your Harry will be a testimony to us all of faith and the power of family. God bless you all Kim.

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  29. I am so sorry that your sweet boy has to go through all of this. Please keep us posted. Sending hugs and prayers your way.

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  30. Love your heart, my friend - wanting to share to help others... reminds me so much of what the Bible from 2 Corintians:

    All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ.

    Standing with you in prayer for your sweet Habu!
    oxoxo,
    Stefanie

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  31. Kim, I have your sweet boy on my prayer list and will be praying!!
    xo

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  32. Harry (and your whole family) is in my prayers. Blessings!

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  33. Poor guy...I am sure he is scared. Saying prayers for all of you...

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  34. oh Kim! I am just catching up on my blog reading and just getting to this now. Please know you have our thoughts and prayers as well. I am so sorry you are having to go through this and even sorrier that you have had to go through this alone for 6 months.

    Huge cyber hugs! xoxo

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  35. Dear Kim, so sorry to read about sweet Harry, lots of prayers from here. Wish you all the best and keep us posted

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  36. So thankful that you and Harry's friendship has been renewed:) I know it means so much to you and as a mom it is like a little hole in our hearts when we are having trouble communicating with our children. I am praying for healing. All of this would sound scary to me also...I'm so sorry all of you are going through this but oh how wonderful that you all have each other. I will be praying that someone walks along beside you in this that has the knowledge to help you understand more about whatever this is that Harry's body is burdened with. Wish I was closer to give out big hugs!

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  37. kim, thank you for your openness and honesty. it is so beautiful. praying for you and harry. donna

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  38. Kim darling are on my prayers, for Harry's peace and comfort. Wisdom in the Doctors and calming for your family. I know it is hard to think your baby may have health issues. GOD is always in control and has bigger plans than we can imagine Jerm 29:11 Blessings Maggie

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  39. I will be praying for Harry, you and your whole family. Thank you so much for sharing your story, now I know exactly how to pray! Many blessings to you!

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  40. Oh Kim please know that your sweet Harry is in my thoughts and prayers. I also pray that you find the strength you need in this time of waiting. BTW the cream you can purchase at walgreens or CVS is Emla. It is a cream of lidocaine and prilocaine. It can be applied to the site 90 minutes prior to being poked. It does numb the area but does not take away the reaction of being stuck. Hoping it might help though. Take care!

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  41. Hi Kim,
    We are sending up lots of prayers for you guys as you go through this time of unknown.... May you stay strong and at peace.

    Hugs,
    Jody

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  42. Thank you for sharing... I know it has to be weighing heavy on your hearts and minds. You will be in my thoughts and prayers!

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  43. Praying. And so glad to hear your relationship has been restored. I imagine it is a big burden on you all, going through this.

    I'm so thankful that you are a woman of Faith. Keep trusting in the Lord.

    Jill

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  44. Saying prayers for Harry and for you.... I know all of this must be occupying your mind and your heart. He is such a sweet boy.....and seems wise beyond his years. Please keep us posted on his progress. He certainly has a lot of people pulling for him:)

    xoxo,

    Lisa

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  45. Hi Kim!! Sorry I haven't been reading blogs lately, I have been lost in the land of newborns. But, i got some time tonight to read through your posts about Harry. I am so so sorry that he is going through this, and i hope that all of these appointments will lead you in the right direction. getting the answers that you need! i will pray for him and his fear of needles too. we had that really horrible fever this summer and bradley absolutely hated getting blood drawn. it is hard to explain that sometimes the doctors have to do things that hurt to help us or better understand what is going on. they are just still so young and trusting. i will be thinking of you!

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  46. Prayers for your sweet Harry. And, prayers for you and your family. Lots of prayers...

    xojoan

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  47. Oh, Kim, I am so sorry to hear of all you have been going through! Know that I understand almost everything you have been experiencing (with the exception that Vivian doesn't understand any or her issues herself - she thinks every doctor's visit is to take care of imaginary boo-boos).

    I am convinced that all of this exists because we live in a fallen world that is not how God intended for it to be. I believe that God will redeem everything that He allows and that He will provide the comfort and strength that we need to endure our trials.

    Hang in there! I know this is tough. But you are greatly loved - by God, by me and by so many others!

    Hope to catch up soon. xoxo

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Thank you for your kindness.