Tomorrow morning, Hannah has another Cerezyme treatment so we will be spending the day down at TCH.
We are also possibly getting the results of Hannah’s DNA sequencing that should give us some insight into whether we are dealing with type 2 (fast progression of the disease) or type 3 (slower progression of the disease). Granted, how many years longer type 3 would give us, we have no idea.
I’m scared to death that it is going to be type 2, and that we would mean we only likely have another year or so with Hannah. I know that because she presented at birth (which is very rare for GD anyway), this would most likely give us a type 2 diagnosis. But the fact that her symptoms at this point are not as severe as “they should be,” gives us hope that she does have type 3.
Maybe it is better not knowing? Because if it is type 2, I don’t know how I am going to handle the news. Seriously, I don’t. I am petrified right now just even thinking about it. Type 2 doesn’t give us much of a chance to fight for a treatment for her. I hate saying this, but type 2 is basically a death sentence. Oh god, it kills me to even think about that. I can’t believe I even just said it outloud.
It just has to be type 3. I need time with her. There is a reason she is here, and it is not to be taken away from me like this without a chance to fight. I would even prefer an “inconclusive” answer, I think, than a type 2.
Argh, I wish I could just turn my brain off and stop thinking about this!!
I hope and pray that every thing works out well tomorrow for Hannah!
Good Luck Nekia
I can see how not knowing would be easier than knowing if it’s bad news. I’m praying for the best news. Hugs to you!
I will be thinking of you guys tomorrow and hoping for the best.
xoxo – will be thinking of you guys. hoping for the best…but you know we will all be here to help either way.
I understand what you are saying. However, I think you are the type that all the information and answers. I pray that tomorrow will be a smooth day and some answers with the best possible results.
*sending love and prayers*
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Your family will be in my thoughts tomorrow. Hannah is a strong, beautiful little girl, just like her Mommy.
Thanks for stopping by my blog. My heart was aching for you as I read your post. I hope that you don’t mind if I pray for you and pass your name on to another friend to pray for you, as well. I just can’t imagine being in your shoes and lack the adequate words….maybe because there are none?
(((hugs)))
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With my first daughter arriving Friday, I have such a deeper understanding of what you are going through. I’ll be thinking about your little Hannah today and hoping that you get to hear that she has type 3. Stay as strong as you can, and use this site for one of the reasons you set it up, to vent, cry and just lay it out there….
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I am feeling so sad about the pain you must be in. I will be praying for you.
I’m so sorry. Really, truly I am. I pray it is Type 3. It’s horrible that there are diseases like this in the world. So cruel, and I hope they find a cure soon!
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You all are in our prayers.
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I will be sending you lots of virtual hugs today.
The dilemma of knowing. I don’t know what to tell you other than God will not give you more to handle than He can help you get through even if that means you allowing Him to carry you through it. Know that we all care about you and your family and that we are here for you in any way we can be. Praying for type 3!!
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I know your mind is racing, and it’s better to confront your thoughts and worries now. It’s natural. I wish I could take the worry from you… you have so much on your plate. My faith has been very low over the past two years or so, but there are certain things I believe in. I won’t go into all of it, but one thing I know for sure is that God is a healing God. It is entirely possible to be healed from a disease that’s considered a death sentence, I have seen it happen. Whatever the outcome, however, I know that you have a strong faith. Trust and know. In the meantime, anytime you need to get that off your chest you be sure to do so. I understand… and you know God does too.
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Praying for the best results.