NF and What Ifs

In the life of NF there are a lot of What Ifs. I imagine when dealing with any disorder you would have a lot of what ifs certainly more than you normally would if these challenges didn't exist in your life. But these challenges do exist. They are a very real part of our day. They are very real for any parent dealing with NF.

The last few weeks have been increasingly hard, for me anyway. Normally I try not to think or dwell on the what ifs. But here is a brutally honest post about how I am feeling and the what ifs I deal with daily. They might not always be on the uppermost part of my mind but they are always there lurking ready to jump forth.

So here are some of my what ifs (In no particular order).......

1) What if the tumor starts to grow again
2) What if we end up back in chemo
3) What if it moves to the left eye
4) What if kids are mean in school
5) What if he develops learning disability
6) What if more tumors grow
7) What if he cant do what he wants when he gets older because of his disability
8) What if he doesn't like himself
9) What if no one wants to marry him
10)What if he or his wife don't have kids because of NF
11)What if his dad and I aren't strong enough
12)What if I fail him
13)What if I cant be strong enough for more chemo
14)What if we lose him
15)What if the tumors turn malignant


I know there are positive antidotes to every what if on my list and many more that I have had or will have. My rational mind is well aware that you cant live in what ifs and that everything will work out. But my heart and my mommy mind sometimes needs to cry out. I have my faith and I know God wont give us more than we can handle. I know we are truly never alone that our loving Saviour is there every step of the way. But again I am human and sometimes the pain and what ifs seem to much to bare.

I started this post several weeks ago. I am doing better now and am feeling much stronger. I started to not post this but I needed to let go of my what ifs for now and send it out there. I think in part to help me but also because I started this blog to help raise awareness and to help others through their challenges. Sometimes I get down reading various blogs where everything is picture perfect. It is very hard for me to let go, bare my soul and let anyone see the real me, even those who are close to me. But when I think of how my trials might help another parent I cant be selfish and hold on to my feelings. Plus I think by writing down my true feelings it will help me learn and grow. It will help me make sense of a disorder that makes no sense.

Overdue update on Kyle's vision.....

We had an appointment with the eye doc back in January and I am just now making myself sit down and write about it.......


We finally had an appointment with the Ophthalmologist to check on Kyle’s vision yesterday. Kyle has had no change in his vision from last year. In his right eye his vision is 20/800. The doc said that basically the nerve is dead and his vision wont come back in that eye.Little Kyle though is very ingenious I tell you! The doc put tape over the good eye to make him try and use the bad one. Kyle would turn his head to look at the images differently becuase you see there was a little place over th top of his nose that the tape didnt stick so he was adjusting to use his good eye. He was so sly we almost didnt catch it. But once the doctor sealed that gap up Kyle was not very happy. Well neither would you if your vision had been cut off and some man was telling you to name shapes! ha ha

He prescribed glasses for Kyle to protect the left eye. There is no prescription in the left side it is simply for protection for the eye, because obviously we need to make sure to protect his left eye. Well we have since ordered Kyle's glasses. He loves them and does really well with them. We let him pick out the color. He likes to say he is like mommy and daddy now (we both wear glasses).

Many have thought since there is no improvement to the vision that we can stop chemo. Well unfortunately this is not the case. The chemo was never really about his vision and was more about stabilizing the tumor for several reasons, the main ones being 1) to relieve the pressure the tumor was causing on the optic nerve and his little eyeball 2) to keep the tumor from growing and moving to the left side. We were very hopeful that Kyle's vision would have improved but that just wasnt meant to be for him. He has adapted very well and you would never know that he is blind in one eye at all. Our Oncologists talked to the Geneticist and they decided since the baseline was the same that we should continue with the rest of chemo.

Since his tumor has been stable since September (sigh of inner bummer) our Oncologist is pretty confident that if it remains that way we will be done in May and the port should come out sometime the end of May/beginning of June.