Wednesday, January 20, 2010

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 " 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!


  1. Kyle is a gorgeous little fellow.
    Wishing him all the best with his chemo for his Optic glioma, my cousin had one 23yrs ago , then they opened the skull to remove them.

    She lost the eyesight but otherwise is ok.
    I have NF and so does my 3yr old son.

  2. Trish, Thank you so much for your comment. We actually learned last week that Kyle's sight in his right eye is gone. He will be blind in that eye. We have had so many wonderful people share their stories. It does give us hope. Thank you again.


  3. Brittney,
    thank you for following me.
    I am sorry to hear Kyle lost his eyesight in the right eye.It must have been hard news.

    I have limited sight in my right eye (unrelated to NF though)

    I just wanted to share with you another mom , her little boy Luke has NF and I think the same tumour as Kyle.

    Together we can support and encourage each other on our journey ...praying for a cure and good management of NF.