Friday, May 11, 2012


Hi all.  Let me start by going back to Monday.  Kendall had her stitches out down in Cincinnati.  It was a long way to drive just to have stitches out, but well worth it.  Unfortunately, the skin had started to grow over some of the stitches and it was a painful procedure to get them out.  She hugged me around my neck and kept very still.  If something was painful, she would let me know by screaming and tightening her grip on me.  SHe is such a strong girl.
I noticed on Monday or Tuesday that her urine was smelling very funny again and it was getting dark.  She wasn't sleeping well at night so we had just increased some of her nerve medications.  I attributed the change in urine to a side effect of the medications.  By Thursday, the urine was stronger and I finally knew I had to cath her ureterostomies to get a sterile urine sample.  As much as I hate having to restrain my daughter so that I can shove a tube in her stomas, it is better than taking her in and having a stranger do it.  I do have to say that I trust my own sterile technique over a stranger's.  So anyways, we sent urine Thursday morning.
Meanwhile, she has continued to have a fever between 100 and 100.9.  She's also been very lethargic and zombie like.  Yesterday, I was ready to take her to the ER if she didn't perk up.  She must have gotten the memo because she did perk up for a few hours before bedtime.  She has been vomiting up most of her feeds but last night we were able to keep about 10 ounces down all through the night. forward 3 hours from when I started this.  She's throwing up again.  The U/A came back and there is an infection, now just waiting to see which med will work against it.
The past week or so I've been questioning why I'm still writing this blog.  There comes a point where this becomes our life.  We have to end the crisis mode and just get used to reality.  I never in a million years would have guessed I'd have the guts to broadcast such personal information about my life to thousands of strangers across the world.  I guess for the most part, I've tried to make this blog about Kendall.  I've left out quite a bit that is "not caring bridge appropriate".  There is a life behind closed doors that does exist when you have a child with a chronic illness.  Sometimes I feel as if I'm being fake or misleading by remaining so positive on this blog, when at times I'm the least positive person in the world.  I've come to the conclusion though that this is Kendall's blog.  This is about her life, her treatment, her path.  I hope there is a day when Kendall will start writing on this same blog.  She will tell it from her own perspective.  Until then, my one and only purpose of writing this blog is to bring awareness through Kendall's journey about the horrible condition that is neurofibromatosis.  By doing so, I will keep a record of how much money Kendall's story has raised to fight NF.  I can't wait to tell her that last year Kendall's Army raised close to $16,000 for NF research.  
May is NF awareness month.  So here is me spreading awareness.  1 in every 3000 children are born with NF.  It could be any of yours that has it and you don't even know about it yet.  It can show up early or later in childhood.  Kendall's was a spontaneous mutation, meaning we don't have NF in our family.  50% of the time it is spontaneous.  When Kendall was suspected to have it, the oncologist told me that I better hope and pray that it is JUST cancer and not NF.  When it was confirmed to be NF, I had a doctor look me in the eyes and tell me there was nothing they could do to fix her.  I work in a hospital where people are having their hearts fixed after years of self inflicted abuse and this man was telling me that my perfect daughter would never be cured.  I did what any mom would do.  I found the Children's TUmor Foundation, became the Chapter Leader for Indiana, and planned my first NF Walk.  
Please help me raise money for research.  I am 100% confident in the Children's Tumor Foundation and the way they allocate funds as a charity.  Even if you just give a few dollars, it adds up fast.  Trust me, last year most of our fundraising came from all of you.  It was amazing!
Here is the link to Kendall's fundraising page.  If you are in the Indianapolis area, please consider signing up for the walk or 5K run.
Also, please pray that Kendall stays well enough to stay out of the hospital this weekend.  We have a busy weekend planned.  The first NF symposium at IU is tomorrow and I'm in charge of the food:)  Also I have to work tomorrow night.  


  1. I will continue to pray for you and for Kendall and for the rest of your family as you go through each crisis. Although I do not have a child with NF, I know that even our "small" crisis' here and there are stressful...I can't imagine going through the trials that you are going through, and whether you are always upbeat or are a wonderful mother, I can see it in the pictures as you hold your daughter, hug your son, etc. You LOVE those kids, you love GOD and that is what makes you a great mom. I will be praying.

  2. Steph-you are so gifted with your sharing of this journey. Your words ring true for me as well. I could copy and paste them onto Angelina's caringbridge site. Thank you for being so honest and forthright. God bless you for your suffering as well. There will be many rewards in heaven. Hugs!

    1. Amy- You better believe it! I remind myself everyday that my rewards for all of this are in heaven. Can't wait to cash in on those!

  3. Whenever I read a blog or facebook post of a mom with a child with special medical needs, I can fill in the blanks and read between the lines. You aren't being fake with positive stuff. You are just not saying the stuff that feels too personal or the stuff that people don't want to hear. Like.. (and I am speaking for myself here - I have no inside knowledge of Steph's home) "I haven't had a date night with my husband in over a year" or "I can't go for a massage because I feel guilty about spending hte money when there's so many medical bills" or "Is my other child going to resent me someday because I didn't spend enough time with him?" or "I am going to punch the next person who looks at me with pity" or "Work is my escape that I need." Those things are the private personal things that feel taboo to talk about.

    I think you are doing a FANTASTIC job of sharing Kendall's story. I think are you a great asset to NF community, and I applaud your commitment to the cause. ((BIG HUGS!!))

  4. I agree with the above comments, especially Anonymous. You are one of the bravest moms I know. You're right up there with my daughter who fights daily for her baby boy and those who suffer from Neuroblastoma. Other than donating to help fund research for treatments and cures, the best thing family and friends can do to help, is to do the little stuff - free babysitting, bring meals/coffee when in the hospital, etc. I think of you, your family, and Kendall daily and pray for healing and peace.
    Karen Reno
    Grandmother to Jack Morton,