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.

Check out Kyle's fundraiser site

We are having a fundraiser for Kyle. I have set up a blog for that and you can check it out at www.chemoforkyle.blogspot.com I will be posting some fun giveaways so check often to learn how you can be enetered!! We have already had so many wonderful people help donate items. Thank you all!

I know how to be a chemo mom.....

A couple weeks ago we discussed the end of chemo with our doctor. For the last year my life has been focused on just making it to May 2010. Then I thought life can get back to normal (or somewhat) I knew we would probably have yearly MRI's to keep an eye on Kyle. But now at the beginning of a new year I realize how close May is and how the end of May wont bring the magical change I had been hanging on to. The doctors are happy with the tumor being stable. Of course as you can imagine Bennett and I as parents were hoping for a little more shrinkage. If Kyle's MRI's continue to show that the tumor is stable the Oncologist says we will be done in May and get the port out as soon as we can.

Well of course so many emotions have been flowing through me like water flowing through a meandering river. Bennett is elated to get that pesky port out of our little boys chest (as am I) Bennett keeps wanting to know if we get to keep it! Ewww gross!!!

I know how to be a chemo mom with a son that has NF. But I don't know how to be just an NF mom in the wait and see phase. I have met so many amazing parents that are in the wait and see phase. Before I was outside looking through the window to that phase. Happy to be window shopping as it were. Well now I find myself with that door open and I am waiting on the threshold. I am not sure I want to go in that store. The store next door has shinny things in the window. Lets go there! ha ha But no, this is the store that is waiting for me and Bennett. We appear to have reservations without knowing how they got made. We will have MRI's every 3 months once chemo is done.

I wrote up a letter a few months ago about Kyle's journey. The closing line on that went something like "...as we continue on Kyle’s journey and see where he takes us!" I reread that last night as I updated the letter with the results of Kyle's eye appointment (another post to come). I realized one thing, it doesn't matter that I don't know how to be a "wait and see NF mom" kyle will teach me, I will continue to reach out to others that have been there. I will continue to educate myself and be able to help those that follow after me. The Lord has helped me be a "chemo mom" he will help me be the best "wait and see NF mom" I can be. I will try to remember that as long as it is enough for Kyle then it will be good enough for me.

And once again I close a letter about Kyle with...

Thank you for your kindness as we continue on Kyle’s journey and see where he takes us!

Be Brave Daddy

In the beginning of treatment our nurse Annie gave us some gloves and a little plastic syringe to bring home and let Kyle play with and become comfortable with. At first he didnt want anything to do with them. They were put aside and forgotten. Then one day he found them and put the gloves on to wash mommy's or daddy's owie but when we tried "kyles" turn he would rip the gloves off and run to the trash. Bennett will bring gloves home from work occasionally in his pockets. Again Kyle finds them and we go through the routine or Kyle washing mommy's or daddy's but never Kyle. Well this morning Kyle came up and washed mommoy's owie and went to the bedroom to do daddy's. So I went to check on my boys because I heard daddy being upset about the owie. By the time I got there Kyle was actually letting daddy wash Kyle's owie!!! He started to fuss and daddy told him "be brave". So then Kyle showed mommy how he washed daddy's owie and Kyle soothed daddy and told him "be brave" It was such a wonderful moment and I hope that this means it will get easier for Kyle.

Daddy and Kyle are alike?.......

A couple weeks ago Kyle discovered his Cafe Au La spots on his tummy. He came to mommy and wanted me to kiss his owie better. What a wonderful teaching opportunity Bennett and I were presented with. We told Kyle that he didn't have an owie but that those were his Cafe Au Lait (cafe-o-lay) spots and that daddy had them to. So Bennett showed Kyle his. Kyle's eyes lit up and you could see the connection as he said "daddy spots?", he then turned to me and asked "Mommy spot?" No we told Kyle not mommy only Daddy and Kyle. Daddy and Kyle match, they are the same. Again Kyle's eyes lit up as he exclaimed "daddy and Kyle Match!" and gave daddy a hug. He spent the next few minutes checking out daddy's spots. Having Daddy raise his shirt so he could see them. Then he kept shaking his head like he was sad for me "mommy, no spots. Daddy & Kyle match!" I was so thankful for the wonderful opportunity Heavenly Father gave us to begin introducing NF to Kyle. That is was a beautiful thing and made one little 2 yr old happy to "match" his daddy. I pray for many more positive experiences to teach Kyle about NF.

NF Awareness bracelets

We ordered NF awareness bracelets for Kyle. The bracelets are a bright green, the NF awareness color. They are made out of silicon like the Lance Armstrong bracelets. Each one is debossed with the phrase "NF Awareness 4 Kyle" (if you click on the picture you can see the wording better). This is the best method of putting a message on these bracelets and last longer. If you want to buy one to help out Kyle and to help raise NF awareness they are $2/ea. You can email me at chemo 4 kyle at yahoo dot com with instructions, quantity etc. Kyle also has a paypal account for his fundraising efforts. It is the same chemo4kyle email. If you have any questions please let me know. We appreciate all the love and support and we are excited to help bring awareness to the NF community!!