neurofibromatosis cafe

A place to talk about NF, have fun and share.


anchorageskyline.jpgSome time ago I received a heart warming message from John in Alaska. He too is a great parent that has a child with neurofibromatosis. I enjoyed reading his message and I spoke with him about sharing his message here, like I have done with some of your messages. I think its a great place to show John that he is not alone and we support him. Read his message and lets show some love to John. He will be happy to see the support he gets here.


Remember you??? How could I not? J

We have had a busy 6 weeks since our last communication, but not a lot of answers. Add the recent medical developments to non-stop company, older son going to camp, short summers in AK, 20 hours of daylight – you get the picture. Appointments with an audiologist and ophthalmologist…ears came out good – eyes have some nodes in the iris, but nothing to be too concerned about. We had an appointment w/ a geneticist from Seattle’s Children’s hospital this past Tuesday. We had anticipated that we would find out a lot of info, but most of it was confirming stuff that we already knew based on our own research. My son will have an MRI in the next few weeks – scheduled to be a full body scan. The troubling thing during our visit was that the geneticist said that we should consult with an oncologist after the MRI is performed because he said that the tumors in my sons arm do not feel ‘normal’. Don’t know exactly where that is headed, but those aren’t the kind of doctors I want to be hanging out with. The geneticist was a specialist in NF and he said that the tumors were ‘harder’ than normal. The specialists from Seattle come up to AK every other month…we said we would go to them if we could speed things up, but they advised that we are running a marathon, not a sprint. I guess we need to get used to that.

We will see and continue to pray.

I had not been to your blog and did not know that you had posted my previous message (and that people had responded). Please thank the folks for the kind words and feel free to pass on my update to them as well as my contact information if they desire to contact me. I probably will not actively participate in online discussions, but if you feel that anything I have to offer can be an encouragement to others, feel free to share it. The reason I feel this way is this: I have seen other message boards/blogs (NOT yours…) where parents seem to take an identity through their child that is afflicted w/ NF or any other illness for that matter. The dialogged seems to go back and forth…and it seems to be a game of ‘one-ups-manship’ on whose child is afflicted more severely…and that IMO is a cruel game. Crap…it seems like on some boards parents stop just short of arguing over whose child has a bigger tumor…

Something that keeps me going through all this is I constantly remind myself how the day started back in June…I try to start my days by declaring ‘God, you are my God, creator of all things, all powerful…later that morning, I rec’d news that the doctors thought my son had lymphoma…(God was and is still God)…after that, I learn that its not lymphoma, but rather a genetic disorder that I have never heard of nor can I pronounce real well (God was and is still God). So, if God is who I believe He is, all this is not so bad…sure, I’d rather NOT have to have this be a part of our life, but who am I to question Him?

So, that’s where I’m at…I probably should not be so harsh on other parents (and its not all of them)…I’m sure they love their children just as much as I love mine…we are all in this together…we all want what’s best for our kids.

Well, my friend (and I hope I can have the honor of calling you my friend) I have to go…work calls…have a great weekend…live every day to its fullest…remember to be thankful to God for the gifts He has blessed you with (All things work together for good for those who are called to His purpose)…Don’t mean to come on strong on this front, but if you don’t know (feel free to ask more and I’ll leave it up to you), there can be peace in all things when you come to the realization that everything is out of your control but definitely in His control. I say it all the time, but trust me knowing it is one thing, living it is another as you can probably pick up through this email.

Best Regards,

Message 2

We hit 78 degrees here yesterday…my office has AC, but my house doesn’t (typ for AK) – I lived in Austin for 5 ½ yrs and San Ant for a year and a half…I don’t miss the heat and don’t miss the amount of people…AK is twice the size of TX but has fewer than 700,000 population.

Looks like my son will be getting a full body MRI – they say he will probably be admitted and put under for the procedure.

Stuff seems to be moving slow – I would just assume take a week off work, have the tests, determine a course of action and then do it as I get these times when I can’t concentrate worth a darn…feel like if we get bad news then we have wasted a lot of time…is it typical to involve an oncologist in the initial treatment plan (?) – thought the risk of malignancy was extremely low, especially in a newly diagnosed child. I just have to keep reminding myself Who is in charge.

Have a great rest of the day!



August 15, 2007 - Posted by | Awareness, Friend, Friends, Just Ask!, neurofibromatosis | , ,


  1. John my thoughts and prayers go out to you and your son I have NF 2 and yet I do not let it get me down I have also had 6 brain surgeries to remove tumors from my brain and happy to say they are all gone now don’t give up and don’t let it get you down take care and hope to hear from you soon

    Comment by Brian | August 15, 2007 | Reply

  2. hi there from Tx

    Comment by Shelley | August 15, 2007 | Reply

  3. Hello John,
    I had written you previously (think Reggie forwared that) when I had just learned about my daughter’s diagnosis. I can tell from your earler post that you have a good sense of humor (I think there was reference to your state being bigger than ours…touche)and you obviously also have great faith. Well, I have found that to be a great combination in dealing with NF. I have found a great deal of support here and hope you will return occasionally to update us and also just to visit. There have been hard days when I was worried and a quick trip here made me feel better. There is great power in numbers and I want to stand with you in faith that we will all be okay.

    Comment by Eleanor | August 16, 2007 | Reply

  4. Well said Eleanor,

    Everyone tells me I’m strong and what a instreation they think I’ am. Its not me. It he that lives in me. All the glory belones to God. Give him the glory. It is because of him that I have the will will go to on. Added to that is the family unit and the wonderful friends here and on myspace. All the wonderful email I get from all of you. All of you that are having the same problems I have. And yet you still take time to write me and support me. I’m so thankful toeveryone. I hope John reads our blob.

    Comment by Reggie | August 16, 2007 | Reply

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