New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Saturday, March 12, 2011

Update on my desmoid

Many of you are aware of my long and colorful health history, including a history of desmoid tumors (rare, soft tissue sarcomas, considered by many to be "benign, but locally aggressive") in my right leg since 1998. I've had two surgeries, two rounds of radiation, 8 months of low-dose chemo and was on narcotics for pain for a full year. Not really fun.

However, I've been thankful for what has seemed like a reprieve in the past several years. My last check-up at MD Anderson Cancer Center in Houston was in March 2008...well, until just recently. Three weeks ago now I found a new nodule on the large tumor in my calf and called my doctor's office. They were able to get me scheduled and in for 3 MRIs (under sedation - to control the twitching in my leg due to nerve damage) and a doctor visit in less than 2 weeks' time, AND God provided housing and help (friends who graciously opened their home, and my mom who took off work and flew down to help us by watching the boys each day) so Brad and I could spend two days at the hospital.

On first review, my doctor told us he "was not at all worried," which was comforting. Then when my case was presented to a multidisciplinary team the following week they agreed that the tumor did not present as something new, and did not require immediate treatment. They would like to see more scans in 3 months, and would like me to meet with a medical oncologist (my main doctor there is currently a surgical oncologist, and more surgery does NOT seem like a good option for me in the foreseeable future). I suspect they will suggest chemotherapy, which, quite frankly, does not interest me at all. I spent 2/3 of a year exhausted (sleeping 12 hours a night!), depressed, and unable to do anything but eat, sleep, cry and go to work. To top it off, at the end of that year my tumor had become more dense, it caused more pain, I started on narcotics, and wound up having a surgery that caused a permanent drop in my right foot. So, I'll do some reading, send them my huge file from Ireland Cancer Center (UH Cleveland) and have them review my history, and then we'll talk about how long we can safely delay whatever it is they suggest. :) See how flexible I can be?(!)

Anyway, we would appreciate your prayers for our family and our church during this time, as this does add extra stress. We're praying that Nathanael (and therefore, Jamison and I) will be able to begin a more normal social life before he turns 2 this summer, but if I am in some kind of treatment that could change. Pray for God to be glorified in and through us.

For more on Nathanael, please see his COTA fundraising page:

Haircuts for the boys - Nathanael's first!

Just over two weeks ago I finally cut Nathanael's hair for the very first time (it was hanging in his face a little too much) - here are a few pictures of the process!

I should note that despite his age (18 mos) his hair has really only been growing for 15 mos because of his chemotherapy, when almost all the hair he was born with fell out. I also should admit that because of this beautiful curls I just couldn't bring myself to cut the back yet, so yes, he does technically have a baby mullet. ;)

It was not easy for me to cut my baby's hair for the first time, but I did save some of those curly locks and put them in his baby book.

And of course Jamison was very cooperative - especially while watching a Veggie Tales on the computer during his turn!